I'm going to stick to my bathroom sink! The Phenergan spills may drive me to drink! It's icky, it's sticky, it happened last night. Not once, not twice, we got in a fight! The newest phase in Carissa's Clutziness Craze, is these phenergan spills and dropping of pills! All over my bed, all med times I dread, 'cuz I end up messy, good thing I'm not dressy! It goes down my tube, like my Jeep drinks his lube! The PJ's were clean, but now they are green, and my tube has leaked, the gut has just freaked!
My hands they shake, my head it aches, my feet are sore, when they hit the floor. My stomach hurts, my heart it flirts, my chest is tight, fuzzy is my sight. My ears they ring, my brain won't sing, I'm in a fog, like I'm near a bog. I'm really dizzy, my hair is frizzy. it always falls out, and there is no doubt, it clogs up the tub, so rub a dub dub! I can't stay awake, many naps I must take. Was falling asleep, while driving the Jeep. It can be quite scary, I should be more wary. But it's hard to know, up and down I go! Sometimes I feel well, then later can tell, that my body is tired and not quite as wired, as I thought it would be, when I left to roam free.
Can you understand, that in DTP land, we are really tough, with all this stuff? But in spite of our plight, we still have to fight, just to get a look, or the term in a book! And all we've wanted, it not to be taunted, and told we are crazy, or just plain lazy! We are seeking a cure, we want to be sure, that the future is bright, and the gut's no fright. No one else to starve, and we all can carve, and enjoy the turkey, and even beef jerkey!
You just need to know, that we write and show, and we share our pain, to get through the rain. This is really tough, there is no fluff. It comes down to foods, which affects our moods. Since we can't eat, even cookies or meat, we are left behind, and long to rewind, to better days, when we had full trays, not a tube or a line, with a smile and "I'm fine."
We don't ask for much, but a healing touch. Will you help us today, so soon we can say? That because we've endured, we've finally been cured. We will eat again, we will definitely win!
I posted this note, so I could devote, some special place, to my personal space. Millions have suffered, and our voices been buffered. We need to be clear, to everyone near, and those far away, that we need them to say. DTP kills, and piles up bills. And I have a friend, who has suffered no end. Do you really care? Will you take the dare? By helping us fight, there is hope in sight!
Sunday, December 5, 2010
Thursday, November 4, 2010
It's day 28...and I can start counting down...
Ok, so I am starting day 28 in rehab. I didn’t expect to be here this long when I started. Technically, for rehab, it’s not that long, but I guess it just threw me off-guard how many areas I really needed to work on. It’s been quite an experience…good and bad, but not one I ever want to do again! The stories I have to tell…mostly nightmarish ones…but some good and interesting ones too. It’s been kinda cool to see how technology has changed lives. In the time I’ve been here, I’ve seen people who couldn’t walk start walking and people who couldn’t talk start talking. I’ve seen a double amputee get legs and start to become independent.
It’s also been a long and difficult challenge. I’m so much younger than anyone else here. I stay in my room, alone, 24/7 with the exception of therapy because of the risk of catching something. The people here don’t communicate a whole lot, and obviously the conversations aren’t on my level or of my interest! There are a few people I talk to, but in general, there is no one here I can truly talk to. Rick has become my closest connection to sanity and conversation. He’s only 50 and has been here almost two years. He’s quite a character! He wheels himself in here at least once a day to chat and keep me company. He hopes to leave in December, and said he’s glad I can go, but is sorry to see me leave him with all the old people…LOL.
It was a struggle more at first when no one knew me or my situation and I had to educate them on how to take care of me. Basic hygiene wasn’t being met such as washing their hands in between patients! I’ve grown to really like a lot of my nurses, but they’ve been changing them around this week so I don’t have the same ones anymore. This is creating problems as I am finding myself re-educating people again with slightly over a week left to go before I can go home.
The goal to get me out of here now is Friday, the 12th. PT thinks I should be ready by then. They are going to do a home assessment next week to see what accommodations or equipment I may need. I will be going home for that evaluation and return to the center afterwards. I know I will return home with a cane, at least for a little while. I may use my walker for a while when not at home if I am going to be out for more extended periods of time. It’s a cool blue one called “Blue Lightning, Jr.” and has a seat and shopping basket with it so if I get tired I can sit down. We’ve turned it around and used it as a wheelchair even sometimes, although it’s not very comfortable!
My current status is that I am anemic and have been for a couple of weeks. The doctor here isn’t being very cooperative though, in spite of receiving calls from my team in Pittsburgh that my anemia needs to be treated more aggressively. I’ve been tired a lot and it’s made my therapy more challenging, so I’m frustrated that they aren’t on top of it better. I called my coordinator again today and she was going to contact the doctor again. Also, my prograf (anti-rejection drug) levels were really low so they are trying to figure out whether to increase my dose or not.
Overall, I think I am getting better. I’m trying to eat a little bit to figure out if there’s anything at all I can handle ok. I’m sick a lot, but I’m forcing it. Thus far, in small portions of everything, bread, bites of pasta, SF/fat free ice cream, eggs, pancakes and waffles, and pretzels have been going down ok…basically carbs and high protein. They bring me an ice cream snack twice a day. I had told the dietitian I thought the SF ice cream here is really, really good, and now I think I am going to turn into it! They send it on every tray and in between too now! I have stored a bunch in my fridge! It’s way too much!
My tube feeding rate has been increased so that I am off five hours during the day now. They increased it more this morning so I can be off for 7 hours a day. My goal is to get it up even one step higher so I can be off most of the day. I’m not sure how this is going to go. Already, I am having problems with tube formula backing up into my stomach and spitting or vomiting it back up, or the formula is also coming out of my tube insertion site because my gut isn’t moving it through fast enough. My hole may also have gotten bigger, so I may need a larger tube placed. This isn’t a complicated ordeal. They can just pull out the old one and stick a new one right in the same spot. I’ve even done it myself!
I get about 1,000 calories a day through my tube, so it’s important that I eat what I can to supplement that. My body is starving for nutrition, so it’s kind of clinging to everything right now. My abdomen is really distended from not digesting well and I have a bit of a cortef/steroid chipmunk cheek face going on, but it’s not too bad. I’m not sure why I’m extra puffy, except the tube formula is adding more fluid and I may be retaining some of it. I have been having trouble peeing, again, and I’m not sure what is going on with that except for it just being part of the whole process of the DTP coming back. I know my gut is slow. I’ve been regurgitating a lot more. I’ve had a sore throat for three days from reflux, and last night I regurgitated and choked on a piece of pretzel I had eaten. It was stuck in my throat for a while and my pills are always getting stuck in my chest. I’ve noticed that my swallowing has also been getting worse. I don’t know what is going on with my body…but I hope to get some answers. I am going to try to get into a doctor for mitochondrial disease and see if that is potentially causing all of my problems. I’ve just been too sick to make any arrangements to go…and I’m not sure my insurance will cover any testing for that. It’s not something they can cure, but it would explain a lot that is going on with my body and if it is mito, I am taking some meds that could actually be contributing to those kinds of problems. So, if there’s anything at all I can do to slow this down or improve some things, I’m all for figuring it out…
I’ve been having a lot of pain in my body. Some days I have a lot of trouble moving and walking. I am stiff a lot. They decided to increase my Fentanyl Patch to 50. I feel stronger walking and am doing really well with the stairs as long as I have a cane. Last week they tried to get me on the floor and teach me how to get back up so when I fall, I can get myself back up, but it became clear that I’m not strong enough to do that yet. They had to pull me up by my gait belt because my upper legs and quads gave out on me! So, they’ve started to focus on strengthening exercises in that part of my body. I imagine that will be a focus next week as I prepare to go home.
The other day the social worker came in…but it wasn’t the same one I’ve had! Apparently the other one left suddenly! She had been working on getting me into a program at home that would provide an aid to help me clean, do laundry, get things together for me, drive me places, run errands, or do other things I need at home in order to help me have some independence. Because I am on Medicaid, I qualify for this and can get a waiver so it won’t cost me anything. I am looking for someone, who is not a close friend now, who might be interested in the position. I don’t know much about it as far as pay and stuff, but anyone can do it. They don’t recommend that I ask a friend because relationships often change in these situations, but I would prefer to have someone that a friend has recommended and shares similar values. I plan to speak with the SW again on Thursday or Friday to let her know they are planning to let me go home next Friday and see if we can get it set up before I go home. I think it will really help me feel more independent and help me get some things done. It can be depressing to have chores hanging over my head and no energy to do them, or errands that have to be run and not feel like doing them. I hope this will help me be able to function better in other areas of my life if I have some assistance with some other things. It should also reduce some of the pressures on my parents and I know it will relieve a lot of my stress and frustrations of not being able to keep up with everything at home.
My birthday was last week, and it was ok…definitely could have been better though! It helped that I received over 150 FB b-day wishes!!!! My parents sent me some balloons and so did my Life Group. On Sunday, my parents picked me up for church and then we went to the Tropical Smoothie afterwards to hang with my sisters, bil’s, and nieces and nephews. That was a nice break from the rehab center for a few hours. It was fun to get new STEELERS PJ pants and a shirt, especially since I had nothing to wear for the game in the evening! I also got a portable charger for my iPhone 4…it’s like a case for the phone and charges at the same time! It’s very cool and something I can really use as I sit in clinic for long days or travel to Pittsburgh and my battery tends to die too soon!
I guess right now my biggest concerns are that I make it through the next 8 days ok. I’m having a really tough time. Even though I've been counting up and finally have a goal now I can count down towards, often the last few days are the toughest...right now I am so weary that 8 days seems like so long to me. I know I've been hospitalized way longer than this before, but this is a different situation and I'm just having a really tough time coping. This is definitely a test of my strength and ability to get through anything...this is not easy. It's one of those experiences I hope to put completely behind me and I hope I am able to eventually forget most of it.
I’m really bored and really frustrated with a lot of the medical issues. I’ve been really nauseous a lot and I’m trying to figure out anything that could be contributing. I’m on so many meds, and although I have been for years, are some of those just affecting me more now as my gut is having more problems? Are my tube feeds too thick and making me sick? They ARE backing up into my stomach and coming out my insertion site. But, as long as I don’t eat I am not as sick…eating is definitely a trigger. But, does the combo of eating and tube feeds cause me a worse problem? Would I be less sick if I had no tube feeds during the day, less at night, and ate more? Or should I stop eating completely and rely only on tube feeds? I could never stop eating completely…I enjoy it too much, even knowing the consequences. Plus, I don’t want my gut to get lazy and make the whole condition worse. I don’t want to increase my nausea med because it makes me so tired and then I have trouble functioning, and my pain meds slow down my gut more so I am trying not to take much of that either. Do I try to treat the GP or the dumping syndrome more? Both are so debilitating…
I have a lot on my mind and I really want to make the right decisions that will get me as healthy as possible. I know I will always have issues and eating is always going to be a challenge for me. I don’t remember a day when I was able to eat and not get at least a little sick or experience a little pain, even since the transplant. I’ve had a problem with everything all along, but it was minor in the beginning so it wasn’t even an issue in my opinion in comparison to the 12 years pre-transplant. But now it’s so severe again…I am not going to let it take over my life and need to figure out how to get my life back, be as functional as possible, do the things I want to do, and live life in spite of my problems. I am not going to let my problems dictate my life. I have spent entirely TOO much time in hospitals this year and I refuse to live like this! I hope that these five weeks I am spending in rehab will make a difference and lessen the number of admissions, but I need to figure out how to keep my nutrition up and control my symptoms better…and I’m not sure at all what the solution is. This has spread beyond my gut…my entire body has become affected and it’s taking over my muscles and joints now too. I have so much pain and stiffness and experience periods of paralysis which have caused some of my falls and a lot of my pain. I didn’t complain about pain a whole lot before the transplant. Now I live with it 24/7 and it’s one of my most debilitating problems. I tend to wobble and lose my balance a lot. My left leg is weaker than my right so we are focusing on that. They are trying to help me learn how to work around problems…how I need to do things differently than the average person when something happens or as a way to conserve energy.
I’m 33. I’m intelligent, creative, fun, passionate, ambitious, and I have many dreams. I want to be there for people with DTP. I want to continue my fight for a cure through G-PACT. I want G-PACT to continue to change lives and be so active and grow. I want to be able to do more. I have so many ideas for awareness and knocking down brick walls! But I’m hindered because I’m often not well enough to devote as much time and energy as I’d like. I’m thankful for my many volunteers and supporters who help keep us going and make an incredible impact every day…there’s no way this can be done by one person. I am so encouraged by how much we have grown in just the past year! I anticipate many great things in the near future for G-PACT and our patients. I am pleased with our progress. But, I often have a hard time keeping up because I am struggling so much myself. That has to change. I know I am here for a reason still. I will never regret my decision to have the transplant. I don’t know what my future holds. I don’t know if this is a temporary setback, or if the underlying condition that caused this initially is going to continue to create more havoc. But I don’t let myself think about it. I just try to deal with each day and what I have now and do what I can, where I can, with what I have.
The past four and a half years, while some very challenging ones, have also been some of the best years of my life. I can’t think of a time period, including college, where I have met and loved so many new people. LCBC has played such a big role in my life and I am so thankful I have had the opportunity to live and meet and love so many new people in the past four years and for the service opportunities I have had. I need to get back to that. The good thing about rehab is that I do have permission to leave once in a while. I’ve been using that opportunity to go to LCBC as many weeks as possible. I always stop by the Wheelhouse to see my kids! I miss them SO much and can’t wait to get back! I also can’t wait to return to my work in the office at LCBC. More than enjoying what I do and having the opportunity to give back to a place that has given me so much in my life, I miss the interaction with people there and being able to escape my medical world several times a week. I like to go even when I am really tired or not feeling too well. I often feel a lot better if I get out the door and get some blood flowing by intentionally picking on them and aggravating Mike with my gold and black Steelers gear…and just the normal chit chat of what they are doing in life…Melissa’s role in “The greatest Christmas Pageant ever” at the Hershey theatre, what’s going on with the fam, seeing Braden with Tricia, hearing about normal life outside the DTP world. I miss hanging out with my Life Group and connecting on a very spiritual level with a group of people who care so much about me and who I also care so much about…a group where I feel open to share anything without being looked down on or fear of it leaving the group. They have been so supportive and loving through all of this and treat me as a normal 33 yo…not as someone who is an invalid. Max and Janae, the two leaders, visited me last weekend. They drove up in spite of how long of a trip it was and hung out with me for about an hour on a night when Max had to work and the night before church. We just talked about life…cats who like lasagna, iPhone apps…just stuff…it was nice to have conversations outside of the medical chat I have to deal with all the time. Sometimes you just don’t realize how much you miss or how important people are in your life until you are not able to do things with them as you normally would. I’m ready to return to society…and I’m not going to let this pain and my problems keep me from doing the things that I want to do. I think I will get help through this independent living program and I am hopeful that will get me on a better track and able to do more things. People here really praise the organization and think it’s exactly what I need.
Thank you for your continued prayers…and for supporting me through this. I’m trying to cope the best I can, but it’s really, really hard. I often downplay the difficulties, or I hide how sick I really am, but in all honestly I’ve been having a really tough time and your support, prayers, notes, comments, texts, calls, cards, and visits have really helped me through. I don’t know what I’d do or what state of mind I’d be in without the support of so many. I love all of you for what you do for me and I only hope that I will always be there for you too in time of need and in between too!
It’s also been a long and difficult challenge. I’m so much younger than anyone else here. I stay in my room, alone, 24/7 with the exception of therapy because of the risk of catching something. The people here don’t communicate a whole lot, and obviously the conversations aren’t on my level or of my interest! There are a few people I talk to, but in general, there is no one here I can truly talk to. Rick has become my closest connection to sanity and conversation. He’s only 50 and has been here almost two years. He’s quite a character! He wheels himself in here at least once a day to chat and keep me company. He hopes to leave in December, and said he’s glad I can go, but is sorry to see me leave him with all the old people…LOL.
It was a struggle more at first when no one knew me or my situation and I had to educate them on how to take care of me. Basic hygiene wasn’t being met such as washing their hands in between patients! I’ve grown to really like a lot of my nurses, but they’ve been changing them around this week so I don’t have the same ones anymore. This is creating problems as I am finding myself re-educating people again with slightly over a week left to go before I can go home.
The goal to get me out of here now is Friday, the 12th. PT thinks I should be ready by then. They are going to do a home assessment next week to see what accommodations or equipment I may need. I will be going home for that evaluation and return to the center afterwards. I know I will return home with a cane, at least for a little while. I may use my walker for a while when not at home if I am going to be out for more extended periods of time. It’s a cool blue one called “Blue Lightning, Jr.” and has a seat and shopping basket with it so if I get tired I can sit down. We’ve turned it around and used it as a wheelchair even sometimes, although it’s not very comfortable!
My current status is that I am anemic and have been for a couple of weeks. The doctor here isn’t being very cooperative though, in spite of receiving calls from my team in Pittsburgh that my anemia needs to be treated more aggressively. I’ve been tired a lot and it’s made my therapy more challenging, so I’m frustrated that they aren’t on top of it better. I called my coordinator again today and she was going to contact the doctor again. Also, my prograf (anti-rejection drug) levels were really low so they are trying to figure out whether to increase my dose or not.
Overall, I think I am getting better. I’m trying to eat a little bit to figure out if there’s anything at all I can handle ok. I’m sick a lot, but I’m forcing it. Thus far, in small portions of everything, bread, bites of pasta, SF/fat free ice cream, eggs, pancakes and waffles, and pretzels have been going down ok…basically carbs and high protein. They bring me an ice cream snack twice a day. I had told the dietitian I thought the SF ice cream here is really, really good, and now I think I am going to turn into it! They send it on every tray and in between too now! I have stored a bunch in my fridge! It’s way too much!
My tube feeding rate has been increased so that I am off five hours during the day now. They increased it more this morning so I can be off for 7 hours a day. My goal is to get it up even one step higher so I can be off most of the day. I’m not sure how this is going to go. Already, I am having problems with tube formula backing up into my stomach and spitting or vomiting it back up, or the formula is also coming out of my tube insertion site because my gut isn’t moving it through fast enough. My hole may also have gotten bigger, so I may need a larger tube placed. This isn’t a complicated ordeal. They can just pull out the old one and stick a new one right in the same spot. I’ve even done it myself!
I get about 1,000 calories a day through my tube, so it’s important that I eat what I can to supplement that. My body is starving for nutrition, so it’s kind of clinging to everything right now. My abdomen is really distended from not digesting well and I have a bit of a cortef/steroid chipmunk cheek face going on, but it’s not too bad. I’m not sure why I’m extra puffy, except the tube formula is adding more fluid and I may be retaining some of it. I have been having trouble peeing, again, and I’m not sure what is going on with that except for it just being part of the whole process of the DTP coming back. I know my gut is slow. I’ve been regurgitating a lot more. I’ve had a sore throat for three days from reflux, and last night I regurgitated and choked on a piece of pretzel I had eaten. It was stuck in my throat for a while and my pills are always getting stuck in my chest. I’ve noticed that my swallowing has also been getting worse. I don’t know what is going on with my body…but I hope to get some answers. I am going to try to get into a doctor for mitochondrial disease and see if that is potentially causing all of my problems. I’ve just been too sick to make any arrangements to go…and I’m not sure my insurance will cover any testing for that. It’s not something they can cure, but it would explain a lot that is going on with my body and if it is mito, I am taking some meds that could actually be contributing to those kinds of problems. So, if there’s anything at all I can do to slow this down or improve some things, I’m all for figuring it out…
I’ve been having a lot of pain in my body. Some days I have a lot of trouble moving and walking. I am stiff a lot. They decided to increase my Fentanyl Patch to 50. I feel stronger walking and am doing really well with the stairs as long as I have a cane. Last week they tried to get me on the floor and teach me how to get back up so when I fall, I can get myself back up, but it became clear that I’m not strong enough to do that yet. They had to pull me up by my gait belt because my upper legs and quads gave out on me! So, they’ve started to focus on strengthening exercises in that part of my body. I imagine that will be a focus next week as I prepare to go home.
The other day the social worker came in…but it wasn’t the same one I’ve had! Apparently the other one left suddenly! She had been working on getting me into a program at home that would provide an aid to help me clean, do laundry, get things together for me, drive me places, run errands, or do other things I need at home in order to help me have some independence. Because I am on Medicaid, I qualify for this and can get a waiver so it won’t cost me anything. I am looking for someone, who is not a close friend now, who might be interested in the position. I don’t know much about it as far as pay and stuff, but anyone can do it. They don’t recommend that I ask a friend because relationships often change in these situations, but I would prefer to have someone that a friend has recommended and shares similar values. I plan to speak with the SW again on Thursday or Friday to let her know they are planning to let me go home next Friday and see if we can get it set up before I go home. I think it will really help me feel more independent and help me get some things done. It can be depressing to have chores hanging over my head and no energy to do them, or errands that have to be run and not feel like doing them. I hope this will help me be able to function better in other areas of my life if I have some assistance with some other things. It should also reduce some of the pressures on my parents and I know it will relieve a lot of my stress and frustrations of not being able to keep up with everything at home.
My birthday was last week, and it was ok…definitely could have been better though! It helped that I received over 150 FB b-day wishes!!!! My parents sent me some balloons and so did my Life Group. On Sunday, my parents picked me up for church and then we went to the Tropical Smoothie afterwards to hang with my sisters, bil’s, and nieces and nephews. That was a nice break from the rehab center for a few hours. It was fun to get new STEELERS PJ pants and a shirt, especially since I had nothing to wear for the game in the evening! I also got a portable charger for my iPhone 4…it’s like a case for the phone and charges at the same time! It’s very cool and something I can really use as I sit in clinic for long days or travel to Pittsburgh and my battery tends to die too soon!
I guess right now my biggest concerns are that I make it through the next 8 days ok. I’m having a really tough time. Even though I've been counting up and finally have a goal now I can count down towards, often the last few days are the toughest...right now I am so weary that 8 days seems like so long to me. I know I've been hospitalized way longer than this before, but this is a different situation and I'm just having a really tough time coping. This is definitely a test of my strength and ability to get through anything...this is not easy. It's one of those experiences I hope to put completely behind me and I hope I am able to eventually forget most of it.
I’m really bored and really frustrated with a lot of the medical issues. I’ve been really nauseous a lot and I’m trying to figure out anything that could be contributing. I’m on so many meds, and although I have been for years, are some of those just affecting me more now as my gut is having more problems? Are my tube feeds too thick and making me sick? They ARE backing up into my stomach and coming out my insertion site. But, as long as I don’t eat I am not as sick…eating is definitely a trigger. But, does the combo of eating and tube feeds cause me a worse problem? Would I be less sick if I had no tube feeds during the day, less at night, and ate more? Or should I stop eating completely and rely only on tube feeds? I could never stop eating completely…I enjoy it too much, even knowing the consequences. Plus, I don’t want my gut to get lazy and make the whole condition worse. I don’t want to increase my nausea med because it makes me so tired and then I have trouble functioning, and my pain meds slow down my gut more so I am trying not to take much of that either. Do I try to treat the GP or the dumping syndrome more? Both are so debilitating…
I have a lot on my mind and I really want to make the right decisions that will get me as healthy as possible. I know I will always have issues and eating is always going to be a challenge for me. I don’t remember a day when I was able to eat and not get at least a little sick or experience a little pain, even since the transplant. I’ve had a problem with everything all along, but it was minor in the beginning so it wasn’t even an issue in my opinion in comparison to the 12 years pre-transplant. But now it’s so severe again…I am not going to let it take over my life and need to figure out how to get my life back, be as functional as possible, do the things I want to do, and live life in spite of my problems. I am not going to let my problems dictate my life. I have spent entirely TOO much time in hospitals this year and I refuse to live like this! I hope that these five weeks I am spending in rehab will make a difference and lessen the number of admissions, but I need to figure out how to keep my nutrition up and control my symptoms better…and I’m not sure at all what the solution is. This has spread beyond my gut…my entire body has become affected and it’s taking over my muscles and joints now too. I have so much pain and stiffness and experience periods of paralysis which have caused some of my falls and a lot of my pain. I didn’t complain about pain a whole lot before the transplant. Now I live with it 24/7 and it’s one of my most debilitating problems. I tend to wobble and lose my balance a lot. My left leg is weaker than my right so we are focusing on that. They are trying to help me learn how to work around problems…how I need to do things differently than the average person when something happens or as a way to conserve energy.
I’m 33. I’m intelligent, creative, fun, passionate, ambitious, and I have many dreams. I want to be there for people with DTP. I want to continue my fight for a cure through G-PACT. I want G-PACT to continue to change lives and be so active and grow. I want to be able to do more. I have so many ideas for awareness and knocking down brick walls! But I’m hindered because I’m often not well enough to devote as much time and energy as I’d like. I’m thankful for my many volunteers and supporters who help keep us going and make an incredible impact every day…there’s no way this can be done by one person. I am so encouraged by how much we have grown in just the past year! I anticipate many great things in the near future for G-PACT and our patients. I am pleased with our progress. But, I often have a hard time keeping up because I am struggling so much myself. That has to change. I know I am here for a reason still. I will never regret my decision to have the transplant. I don’t know what my future holds. I don’t know if this is a temporary setback, or if the underlying condition that caused this initially is going to continue to create more havoc. But I don’t let myself think about it. I just try to deal with each day and what I have now and do what I can, where I can, with what I have.
The past four and a half years, while some very challenging ones, have also been some of the best years of my life. I can’t think of a time period, including college, where I have met and loved so many new people. LCBC has played such a big role in my life and I am so thankful I have had the opportunity to live and meet and love so many new people in the past four years and for the service opportunities I have had. I need to get back to that. The good thing about rehab is that I do have permission to leave once in a while. I’ve been using that opportunity to go to LCBC as many weeks as possible. I always stop by the Wheelhouse to see my kids! I miss them SO much and can’t wait to get back! I also can’t wait to return to my work in the office at LCBC. More than enjoying what I do and having the opportunity to give back to a place that has given me so much in my life, I miss the interaction with people there and being able to escape my medical world several times a week. I like to go even when I am really tired or not feeling too well. I often feel a lot better if I get out the door and get some blood flowing by intentionally picking on them and aggravating Mike with my gold and black Steelers gear…and just the normal chit chat of what they are doing in life…Melissa’s role in “The greatest Christmas Pageant ever” at the Hershey theatre, what’s going on with the fam, seeing Braden with Tricia, hearing about normal life outside the DTP world. I miss hanging out with my Life Group and connecting on a very spiritual level with a group of people who care so much about me and who I also care so much about…a group where I feel open to share anything without being looked down on or fear of it leaving the group. They have been so supportive and loving through all of this and treat me as a normal 33 yo…not as someone who is an invalid. Max and Janae, the two leaders, visited me last weekend. They drove up in spite of how long of a trip it was and hung out with me for about an hour on a night when Max had to work and the night before church. We just talked about life…cats who like lasagna, iPhone apps…just stuff…it was nice to have conversations outside of the medical chat I have to deal with all the time. Sometimes you just don’t realize how much you miss or how important people are in your life until you are not able to do things with them as you normally would. I’m ready to return to society…and I’m not going to let this pain and my problems keep me from doing the things that I want to do. I think I will get help through this independent living program and I am hopeful that will get me on a better track and able to do more things. People here really praise the organization and think it’s exactly what I need.
Thank you for your continued prayers…and for supporting me through this. I’m trying to cope the best I can, but it’s really, really hard. I often downplay the difficulties, or I hide how sick I really am, but in all honestly I’ve been having a really tough time and your support, prayers, notes, comments, texts, calls, cards, and visits have really helped me through. I don’t know what I’d do or what state of mind I’d be in without the support of so many. I love all of you for what you do for me and I only hope that I will always be there for you too in time of need and in between too!
Friday, October 29, 2010
Day 21- and my birthday!
I had a decent birthday, considering. I guess it depends how you look at it! I was celebrating with Alf, who shares my b-day, and at the very start of my Hulu marathon in the AM I fell asleep and didn’t wake up until about 2 PM. It’s ok though because I really needed the sleep too. I knew I was feeling pretty anemic last Friday, and Saturday and Sunday I noticed I was looking pretty washed out. When they checked my labs on Monday it showed my counts were almost to transfusion levels. They have given me Aranesp, a blood product I take to bring my counts up, but they gave me a low dose and usually it doesn’t bring it up enough to be very effective. I highly suspect I’ll end up needing a transfusion before my counts come back up. They don’t realize here that it’s not as simple as Aranesp in a transplant patient! Today they drew all my iron levels to see if I am low on iron and they started me on an iron supplement. That kinda makes me sick, but I know it may be necessary. If my iron is really depleted, I know my docs at Pitt or HMC will recommend an iron infusion. Hopefully they aren’t that low because IV iron is so hard on my body. I also asked them to draw a prograf (anti-rejection med) level because my hands and feet feel like they are on fire. That could be the neuropathy acting up, or it could be high prograf. Since I don’t know and it needs to be checked anyway, I just asked them to go ahead and do it.
I graduated from Occupational Therapy today! I had no idea I was that close, but she came in today and asked me if I was ready for my last session of OT. Even though I could barely lift my head and was sleeping because of the anemia, I got up anyway and went so I could finish up. She is out of town on Friday so I wouldn’t finish up until Monday if I didn’t go today. It was a nice b-day surprise. Now I can focus more on PT. I get so tired doing both, so hopefully now I can do more in PT and speed that process up. I’m doing well. I’ve learned how to do stairs well with a cane. I know I will need a cane for a while at home, but I should be able to get rid of it eventually. It’s so slow though! I hate that it takes me SSSSOOO long and so much effort to go up and down stairs! But, at least I can and am not crawling up the stairs anymore.
My walking is a lot better. I still wobble sometimes and they have to grab the gait belt to keep me from falling, but I am more steady and feel more confident on my feet. I’ve been more wobbly this week than last simply because of the anemia, but I think once we get that fixed I’ll be better again. They are working on helping me learn how to get back up when I fall down, but that didn’t go so well. I was on the mat and tried to get back up and I couldn’t. They realized I still have a ways to go on strengthening in order to do that because even though I could crawl to the nearest piece of furniture and push up some with my hands/arms, my legs wouldn’t let me get up the rest of the way. They had to pull me up. So, I definitely need to strengthen my legs more. They are also helping to strengthen my lower abdominal muscles. We can’t do much with upper muscles because I’m not completely closed over my liver and it could cause some damage.
My tube feedings are still only at 25/cc’s an hour and I’m having a tough time. I need the 5 hours off that I do get though…it keeps me from getting as backed up I think to have some time off for my gut to clear out some. I’m having problems with a lot of drainage now around my site which means that I am definitely getting backed up more now at this rate. My tube feeding formula is coming out of the tube insertion site, so my gut is really full and running slow. I even threw up some of my tube formula the other night and they had to stop the feedings for a few hours to let things move through. This is not a good sign…it means my intestines are definitely on the slow end again, pushing the formula back into my stomach instead of forward into my small bowel, and I might not be able to get my feedings up high enough to be off of them for very long during the day. I hope we can...I would really like to have the days off, but I’ll do what I have to do. We also haven’t increased the rate because of the anemia and some other labs being quirky. My protein and albumin are low (indicates overall malnutrition), and my WBC count is low…kinda scary because it means I am at risk for catching an infection and I’m not in the best place to avoid one!
After sleeping until 2 and then graduating from OT, I fell asleep during my Alf marathon again! Finally, in the evening, I was alert enough to watch more episodes and really enjoyed going back memory lane to Melmac! The activities director brought me a brownie with one candle…I managed to blow that one out the first time! I never do that! I didn’t have the heart to tell her I can’t eat sugar, or the will power to avoid it completely…so I ate a few bites and may just pick at it here and there over the next few days. It’ll probably go bad before I even finish it, but a bite here and there can’t hurt me much…right? ;) I received balloons from my parents and my life group while I was sleeping! It was cool to wake up and see them there! I also got almost 150 FB messages which was really cool and meant a lot! It’s been so cool to hear from so many people!
On Sunday, my mom is going to pick me up to take me to LCBC for the second gathering again! I can’t wait. It’ll get me out of the house for a few hours and with my very cool friends there. I love LCBC so much and being able to go last week totally helped me survive this week. After that, we are going to do something with my sisters and their families. I don’t know exactly what yet, but we will celebrate my birthday somehow on Sunday. My mom has suggested that we go back to the house after church for a while, but I told her if I went home for a few hours it would make it soooo much harder to have to come back to the rehab center. So, I think we are considering other options.
As I’ve stated a few times, I have adjusted quite well here. I like the nurses a lot and they know me well now. In fact, I’m a bit spoiled now The cleaning team does a good job and knows how important it is to keep my place extra clean. In fact, I heard one of the ladies tell another how important it is to keep my room extra tidy. She’s really sweet and brought me some sugar free chocolate yesterday! The food here sucks…I don’t eat much of it, but I have to eat something in order to make up for the calories I’m not getting via my tube, and to make up for what I’m losing too because it’s definitely not all staying in! Mostly I eat the SF Jell-o, and they have REALLY good and creamy SF/Fat free ice cream that I eat. Other than that, I may pick at bread and toast, crackers, and occasional bites of pasta. The rest of it scares me! I’m not sure how it was prepared or where it came from! I’m getting REALLY sick though. Mornings and afternoons I feel ok, but by the end of the day I am really sick and having a lot of pain.
I’m keeping myself busy. I have my computer and mostly work on that…facebook, of course, and doing some G-PACT work as I have the focus. I have my Wii here, my iPhone games, books, word puzzles, drawing pad and pencils, and other stuff…I just kinda pick around at things. I’ve been having really bad headaches from the anemia and so worn out though that I haven’t been able to do much that requires much focus. But I’m not as bored as I could be considering it’s been three weeks, and right after three weeks before this. I still have plenty of things I can do to occupy my time. Rick usually drops by at least once a day to chat for a little while. He’s quite a character!
Overall, I think things are looking up. If you want to know specifically how to pray, these are the biggest issues I am dealing with right now:
1. Anemia- it’s kicking my butt and I can hardly get out of bed some days. It’s making my therapy a lot more challenging and slowing things down
2. Coping- I’m coping pretty well considering, but it’s still a tough situation to be in and I’m just ready to go home and start my life again. I realize I may be adjusting to a new norm when I get home. I have a hospital bed, but will be walking with a cane and have other adaptive equipment to adjust to once I get home. I’m used to a walker, and in some ways I feel more comfortable using that than a cane, but think I’m accepting the use of a cane more and more.
3. Trying to increase tube rate. It’s not going so well and I’m sick a lot. We need to consider if possibly switching to a diabetic tube formula would help me with some of my symptoms, especially blood glucose changes when not infusing. But those are lower in calories. They are also thinner though and may move through more easily…
4. I had gained a couple of pounds the first few days I was here, which may have been fluid weight in part because I was a bit dry, but I have lost a few again too because of recently being a lot sicker. I’ve been trying to avoid the phenergan and dilaudid because of side effects, but in an effort to do that, some of my other symptoms have worsened. I’m not sure which is the right direction to go…so figuring out a diet still that gives me a few hundred calories to balance what I am not getting in tube feeds and things that don’t make me as sick as I’ve been getting. More stability I guess is what I need.
I really do have a lot to be thankful for in spite of how challenging this has been for me. I have a room to myself here. My nurses know to stay on top of things so they are extra alert to my needs now. I have great friends who have helped me out in numerous ways while I’ve been here. I am improving. The Steelers have been winning The social worker is trying to get me home in a situation where I can be more independent. I think I will go home and be much safer and have a lot of accommodations and resources I didn’t have before coming in. It’s been a pretty long haul, but I do see a light at the end of the tunnel. I am disappointed I will miss voting on Tuesday, but it’s a small price to pay if I can get better and go home and STAY home for a while this time.
I graduated from Occupational Therapy today! I had no idea I was that close, but she came in today and asked me if I was ready for my last session of OT. Even though I could barely lift my head and was sleeping because of the anemia, I got up anyway and went so I could finish up. She is out of town on Friday so I wouldn’t finish up until Monday if I didn’t go today. It was a nice b-day surprise. Now I can focus more on PT. I get so tired doing both, so hopefully now I can do more in PT and speed that process up. I’m doing well. I’ve learned how to do stairs well with a cane. I know I will need a cane for a while at home, but I should be able to get rid of it eventually. It’s so slow though! I hate that it takes me SSSSOOO long and so much effort to go up and down stairs! But, at least I can and am not crawling up the stairs anymore.
My walking is a lot better. I still wobble sometimes and they have to grab the gait belt to keep me from falling, but I am more steady and feel more confident on my feet. I’ve been more wobbly this week than last simply because of the anemia, but I think once we get that fixed I’ll be better again. They are working on helping me learn how to get back up when I fall down, but that didn’t go so well. I was on the mat and tried to get back up and I couldn’t. They realized I still have a ways to go on strengthening in order to do that because even though I could crawl to the nearest piece of furniture and push up some with my hands/arms, my legs wouldn’t let me get up the rest of the way. They had to pull me up. So, I definitely need to strengthen my legs more. They are also helping to strengthen my lower abdominal muscles. We can’t do much with upper muscles because I’m not completely closed over my liver and it could cause some damage.
My tube feedings are still only at 25/cc’s an hour and I’m having a tough time. I need the 5 hours off that I do get though…it keeps me from getting as backed up I think to have some time off for my gut to clear out some. I’m having problems with a lot of drainage now around my site which means that I am definitely getting backed up more now at this rate. My tube feeding formula is coming out of the tube insertion site, so my gut is really full and running slow. I even threw up some of my tube formula the other night and they had to stop the feedings for a few hours to let things move through. This is not a good sign…it means my intestines are definitely on the slow end again, pushing the formula back into my stomach instead of forward into my small bowel, and I might not be able to get my feedings up high enough to be off of them for very long during the day. I hope we can...I would really like to have the days off, but I’ll do what I have to do. We also haven’t increased the rate because of the anemia and some other labs being quirky. My protein and albumin are low (indicates overall malnutrition), and my WBC count is low…kinda scary because it means I am at risk for catching an infection and I’m not in the best place to avoid one!
After sleeping until 2 and then graduating from OT, I fell asleep during my Alf marathon again! Finally, in the evening, I was alert enough to watch more episodes and really enjoyed going back memory lane to Melmac! The activities director brought me a brownie with one candle…I managed to blow that one out the first time! I never do that! I didn’t have the heart to tell her I can’t eat sugar, or the will power to avoid it completely…so I ate a few bites and may just pick at it here and there over the next few days. It’ll probably go bad before I even finish it, but a bite here and there can’t hurt me much…right? ;) I received balloons from my parents and my life group while I was sleeping! It was cool to wake up and see them there! I also got almost 150 FB messages which was really cool and meant a lot! It’s been so cool to hear from so many people!
On Sunday, my mom is going to pick me up to take me to LCBC for the second gathering again! I can’t wait. It’ll get me out of the house for a few hours and with my very cool friends there. I love LCBC so much and being able to go last week totally helped me survive this week. After that, we are going to do something with my sisters and their families. I don’t know exactly what yet, but we will celebrate my birthday somehow on Sunday. My mom has suggested that we go back to the house after church for a while, but I told her if I went home for a few hours it would make it soooo much harder to have to come back to the rehab center. So, I think we are considering other options.
As I’ve stated a few times, I have adjusted quite well here. I like the nurses a lot and they know me well now. In fact, I’m a bit spoiled now The cleaning team does a good job and knows how important it is to keep my place extra clean. In fact, I heard one of the ladies tell another how important it is to keep my room extra tidy. She’s really sweet and brought me some sugar free chocolate yesterday! The food here sucks…I don’t eat much of it, but I have to eat something in order to make up for the calories I’m not getting via my tube, and to make up for what I’m losing too because it’s definitely not all staying in! Mostly I eat the SF Jell-o, and they have REALLY good and creamy SF/Fat free ice cream that I eat. Other than that, I may pick at bread and toast, crackers, and occasional bites of pasta. The rest of it scares me! I’m not sure how it was prepared or where it came from! I’m getting REALLY sick though. Mornings and afternoons I feel ok, but by the end of the day I am really sick and having a lot of pain.
I’m keeping myself busy. I have my computer and mostly work on that…facebook, of course, and doing some G-PACT work as I have the focus. I have my Wii here, my iPhone games, books, word puzzles, drawing pad and pencils, and other stuff…I just kinda pick around at things. I’ve been having really bad headaches from the anemia and so worn out though that I haven’t been able to do much that requires much focus. But I’m not as bored as I could be considering it’s been three weeks, and right after three weeks before this. I still have plenty of things I can do to occupy my time. Rick usually drops by at least once a day to chat for a little while. He’s quite a character!
Overall, I think things are looking up. If you want to know specifically how to pray, these are the biggest issues I am dealing with right now:
1. Anemia- it’s kicking my butt and I can hardly get out of bed some days. It’s making my therapy a lot more challenging and slowing things down
2. Coping- I’m coping pretty well considering, but it’s still a tough situation to be in and I’m just ready to go home and start my life again. I realize I may be adjusting to a new norm when I get home. I have a hospital bed, but will be walking with a cane and have other adaptive equipment to adjust to once I get home. I’m used to a walker, and in some ways I feel more comfortable using that than a cane, but think I’m accepting the use of a cane more and more.
3. Trying to increase tube rate. It’s not going so well and I’m sick a lot. We need to consider if possibly switching to a diabetic tube formula would help me with some of my symptoms, especially blood glucose changes when not infusing. But those are lower in calories. They are also thinner though and may move through more easily…
4. I had gained a couple of pounds the first few days I was here, which may have been fluid weight in part because I was a bit dry, but I have lost a few again too because of recently being a lot sicker. I’ve been trying to avoid the phenergan and dilaudid because of side effects, but in an effort to do that, some of my other symptoms have worsened. I’m not sure which is the right direction to go…so figuring out a diet still that gives me a few hundred calories to balance what I am not getting in tube feeds and things that don’t make me as sick as I’ve been getting. More stability I guess is what I need.
I really do have a lot to be thankful for in spite of how challenging this has been for me. I have a room to myself here. My nurses know to stay on top of things so they are extra alert to my needs now. I have great friends who have helped me out in numerous ways while I’ve been here. I am improving. The Steelers have been winning The social worker is trying to get me home in a situation where I can be more independent. I think I will go home and be much safer and have a lot of accommodations and resources I didn’t have before coming in. It’s been a pretty long haul, but I do see a light at the end of the tunnel. I am disappointed I will miss voting on Tuesday, but it’s a small price to pay if I can get better and go home and STAY home for a while this time.
Saturday, October 23, 2010
Day 16 in Spruce Manor Rehab
I haven't been able to really blog that much because I'm struggling with a lot of fatigue because of at least two hours of therapy a day and had some major issues on Friday with my blood sugar. Nutrition is trying to increase my tube feed rate to get me on just overnight. I FAILED today w/ blood sugar issues, so they aren't going to make any more changes until Monday, depending how the weekend goes. One of the goals coming in was to get my tube feeds back up to a rate where I can get them all in overnight. This is so I will have more of an appetite during the day and not have to carry my backpack around with me all day. So, Wednesday evening we increased my rate by 5 cc's so I could be off for five hours a day. I unhook at 10 am and hook back up at 3 PM because they take me for PT/OT at 10 usually and they don't like to disconnect me twice. I'll change that schedule more when I am out of here to fit the schedule I have for my REAL life out of the medical environment.
Thursday went well being off of it for five hours, and I actually felt better because I needed that time off for my gut to clear out some of the formula. When it runs constantly, I get backed up a lot and feel full all the time. Unfortunately, Friday didn't go quite as well. I was so tired on Friday that I slept through breakfast (which is usually half a piece of toast or a bowl of Jell-o) and didn't have a chance to eat my snack (SF, fat free ice cream) before they unhooked me and took me to OT. While in OT, I got really sick, started crashing, and was not feeling well at all. Fortunately, the dietitian came in to ask me some questions and I told her that the problem I had before when trying to increase the rate was that during the time I was not infusing, my blood sugar would go crazy and by the end of the day I was so tired and weak I could hardly get to bed or even do anything at all. She could tell I was not doing well and went to the kitchen and got me some of my SF Jell-o and pudding and brought it back to me to eat in OT so I could get through the rest of it and PT too. She told me from now on to always take my snack to OT/PT if I don't get a chance to eat it before. I told her it was all a fluke because usually I would have at least eaten a little bit for breakfast, but was having a particularly bad day and it just ended up I didn't get anything in all morning. I have to be really conscientious of the importance of trying to eat a little but at regular intervals when I am not infusing so that I can keep my blood sugar stable. She told my nurse, who was very concerned, and as a result all day they keep making sure I have eaten something...some small bite of anything throughout the day. Unfortunately when I eat if my dumping syndrome kicks in, that will make my levels go crazy too. I also get really sick from that, so eating is definitely not a guarantee that I'm going to feel better! It could make me feel worse! In this case, fortunately I did feel better and I thought I probably would because I could tell I wasn't feeling well because of NOT eating. However, with it getting out of whack in the morning it ended up being wacky all day so I had a really rough day on Friday. I have tried to keep it up. Hopefully I have gotten it back under control, although I have a headache now, so I'm not sure. I'll keep working on it. This is the craziest disease!
I don't have a solid discharge (d/c) plan yet, but the therapy coordinator talked to me today about what things I need to work on to get home and asked me a lot of questions about home setup and what I struggled with the most at home. We are starting higher level OT now and planning to work on home "chores" like trying to do some laundry, getting in the car, handwriting, picking things up off the floor (they may give me a "reacher" device), and getting in the shower. I'm not going to take a shower or practice in their shower because I am concerned about the germs, but they are going to help me in other ways to work on that. They are going to get me on the floor and help me work on getting back up. PT is working with me on steps & balance more. I am using a cane to walk and it does seem to help me now, although once in a while I still wobble and they have to grab me and my gait belt to keep me from falling.
I'm stronger and my balance is better with the cane. My endurance is STILL really low. I tire very easily and am still in a lot of body pain and have a lot of numbness in my hands and feet. So, we will also work on energy saving techniques too w/ OT...how to get things done utilizing least energy possible. This includes sitting down as much as possible to do things, getting everything I need together all at once when I am up and putting them close to me so I don't have to keep getting up and down, and basic things like that. The social worker is trying to get me into a program where an aide will come in a few hours day or week, depending on my desires/needs to help w/ things I have trouble with like laundry, vacuuming, cleaning, running errands, any cooking I may want/need, general organization and other work to make life easier. The good thing about this program is I won't have to be "homebound" under Medicare standards because it's not a Medicare program. I can still live life, volunteer, go to church, drive when I feel like it, go to friends, houses, and run errands when I want. I call the shots. It's just some support for things I have trouble getting done and would make my life easier, make me less dependent on my parents, and if it goes well, could lead to my ability to move out on my own someday. It will help me be able to do more things a "normal" person would do since it will take away some of the other pressures and things that can zap my energy and prevent me from doing certain things. I can choose anyone to do this, or the state can recommend someone to match up with me. The social worker suggested that I not choose someone who is currently a friend because, no matter how close I may feel, once they start doing this kind of work for me and getting into some pretty personal stuff potentially, the relationship may change. I agree with that, but am hoping I can find someone who shares my values and it won't be too difficult to find a match, whether through the state or the ideas of others who may know someone who would be good to work with me.
I know they want to do a home evaluation before I leave. This means someone from here (or perhaps a related facility closer to my home) will go to my house and see what accommodations or adaptive equipment I may need to help make things easier and safer when I get back home. I already have a hospital bed. They may suggest a shower seat, I know I will need a cane for a little while, and a reaching device could be helpful too. The SW also wants me to meet with someone from this organization that will provide me with an aide to discuss exactly what I need and how they can help. She's trying to see if I qualify, but doesn't think it will be a problem. I had hoped to be home for my b-day on Thursday because I have been in the hospital my last two b-days, but I don't think that is reasonable at this point. I think I'm getting close to the end, but still have a ways to go with certain things. I plan to have some kind of big celebration though with friends and family once I am home though...I seriously need some time with people outside of the medical environment. This is about to drive me crazy! I need to talk about things not medically related...anything!!! Just ANYTHING!!! Months of this ridiculousness...I've been in almost as much as out since the beginning of June I think. Hopefully, this is going to be the last for a while. I have my tube now for nutrition so that avoids the admissions to replace my tube, admissions for malnutrition (hopefully...if I can tolerate them ok and absorb the nutrients), and this admission for fall related stuff. There's always a chance of complications, bowel obstructions, anemia, and other wacky things, but I hope that with this j-tube I will be at least somewhat more stable, energetic, and able to function more normally!
Thanks for the prayers. There's a lot going on with me medically and a lot going on in G-PACT too. We are making some really cool progress, connections, and doing a lot that has the potential to take us pretty far. We just deposited our $20,000 Chase grant that people worked so hard to help us get, and we have some very cool awareness ideas on that! We are rewriting our Bylaws because we have grown and changed so much it's become necessary and have a number of fundraisers and other activities planned. We are getting a new, very cool website soon. Medtronic is including us in their press releases they send out to patients, Thrive Rx wants to have a G-PACTer to represent DTP on their board, and we have physicians referring us to their patients all the time. Our fan page on FB keeps growing and growing and growing, our support groups are expanding, and we are getting so much interest it's hard to keep up with everything! We are starting to make plans for the DDNC and plan to attend DDW again this year. There is so much I can't remember! Things are moving in the right direction and it's exciting to see patients come together and have such a desire to help us increase awareness of DTP! I'm so ready to be healthier so I can spend more time focusing on G-PACT and getting back to my more normal life at church, with friends, and the other things I enjoy doing.
Thursday went well being off of it for five hours, and I actually felt better because I needed that time off for my gut to clear out some of the formula. When it runs constantly, I get backed up a lot and feel full all the time. Unfortunately, Friday didn't go quite as well. I was so tired on Friday that I slept through breakfast (which is usually half a piece of toast or a bowl of Jell-o) and didn't have a chance to eat my snack (SF, fat free ice cream) before they unhooked me and took me to OT. While in OT, I got really sick, started crashing, and was not feeling well at all. Fortunately, the dietitian came in to ask me some questions and I told her that the problem I had before when trying to increase the rate was that during the time I was not infusing, my blood sugar would go crazy and by the end of the day I was so tired and weak I could hardly get to bed or even do anything at all. She could tell I was not doing well and went to the kitchen and got me some of my SF Jell-o and pudding and brought it back to me to eat in OT so I could get through the rest of it and PT too. She told me from now on to always take my snack to OT/PT if I don't get a chance to eat it before. I told her it was all a fluke because usually I would have at least eaten a little bit for breakfast, but was having a particularly bad day and it just ended up I didn't get anything in all morning. I have to be really conscientious of the importance of trying to eat a little but at regular intervals when I am not infusing so that I can keep my blood sugar stable. She told my nurse, who was very concerned, and as a result all day they keep making sure I have eaten something...some small bite of anything throughout the day. Unfortunately when I eat if my dumping syndrome kicks in, that will make my levels go crazy too. I also get really sick from that, so eating is definitely not a guarantee that I'm going to feel better! It could make me feel worse! In this case, fortunately I did feel better and I thought I probably would because I could tell I wasn't feeling well because of NOT eating. However, with it getting out of whack in the morning it ended up being wacky all day so I had a really rough day on Friday. I have tried to keep it up. Hopefully I have gotten it back under control, although I have a headache now, so I'm not sure. I'll keep working on it. This is the craziest disease!
I don't have a solid discharge (d/c) plan yet, but the therapy coordinator talked to me today about what things I need to work on to get home and asked me a lot of questions about home setup and what I struggled with the most at home. We are starting higher level OT now and planning to work on home "chores" like trying to do some laundry, getting in the car, handwriting, picking things up off the floor (they may give me a "reacher" device), and getting in the shower. I'm not going to take a shower or practice in their shower because I am concerned about the germs, but they are going to help me in other ways to work on that. They are going to get me on the floor and help me work on getting back up. PT is working with me on steps & balance more. I am using a cane to walk and it does seem to help me now, although once in a while I still wobble and they have to grab me and my gait belt to keep me from falling.
I'm stronger and my balance is better with the cane. My endurance is STILL really low. I tire very easily and am still in a lot of body pain and have a lot of numbness in my hands and feet. So, we will also work on energy saving techniques too w/ OT...how to get things done utilizing least energy possible. This includes sitting down as much as possible to do things, getting everything I need together all at once when I am up and putting them close to me so I don't have to keep getting up and down, and basic things like that. The social worker is trying to get me into a program where an aide will come in a few hours day or week, depending on my desires/needs to help w/ things I have trouble with like laundry, vacuuming, cleaning, running errands, any cooking I may want/need, general organization and other work to make life easier. The good thing about this program is I won't have to be "homebound" under Medicare standards because it's not a Medicare program. I can still live life, volunteer, go to church, drive when I feel like it, go to friends, houses, and run errands when I want. I call the shots. It's just some support for things I have trouble getting done and would make my life easier, make me less dependent on my parents, and if it goes well, could lead to my ability to move out on my own someday. It will help me be able to do more things a "normal" person would do since it will take away some of the other pressures and things that can zap my energy and prevent me from doing certain things. I can choose anyone to do this, or the state can recommend someone to match up with me. The social worker suggested that I not choose someone who is currently a friend because, no matter how close I may feel, once they start doing this kind of work for me and getting into some pretty personal stuff potentially, the relationship may change. I agree with that, but am hoping I can find someone who shares my values and it won't be too difficult to find a match, whether through the state or the ideas of others who may know someone who would be good to work with me.
I know they want to do a home evaluation before I leave. This means someone from here (or perhaps a related facility closer to my home) will go to my house and see what accommodations or adaptive equipment I may need to help make things easier and safer when I get back home. I already have a hospital bed. They may suggest a shower seat, I know I will need a cane for a little while, and a reaching device could be helpful too. The SW also wants me to meet with someone from this organization that will provide me with an aide to discuss exactly what I need and how they can help. She's trying to see if I qualify, but doesn't think it will be a problem. I had hoped to be home for my b-day on Thursday because I have been in the hospital my last two b-days, but I don't think that is reasonable at this point. I think I'm getting close to the end, but still have a ways to go with certain things. I plan to have some kind of big celebration though with friends and family once I am home though...I seriously need some time with people outside of the medical environment. This is about to drive me crazy! I need to talk about things not medically related...anything!!! Just ANYTHING!!! Months of this ridiculousness...I've been in almost as much as out since the beginning of June I think. Hopefully, this is going to be the last for a while. I have my tube now for nutrition so that avoids the admissions to replace my tube, admissions for malnutrition (hopefully...if I can tolerate them ok and absorb the nutrients), and this admission for fall related stuff. There's always a chance of complications, bowel obstructions, anemia, and other wacky things, but I hope that with this j-tube I will be at least somewhat more stable, energetic, and able to function more normally!
Thanks for the prayers. There's a lot going on with me medically and a lot going on in G-PACT too. We are making some really cool progress, connections, and doing a lot that has the potential to take us pretty far. We just deposited our $20,000 Chase grant that people worked so hard to help us get, and we have some very cool awareness ideas on that! We are rewriting our Bylaws because we have grown and changed so much it's become necessary and have a number of fundraisers and other activities planned. We are getting a new, very cool website soon. Medtronic is including us in their press releases they send out to patients, Thrive Rx wants to have a G-PACTer to represent DTP on their board, and we have physicians referring us to their patients all the time. Our fan page on FB keeps growing and growing and growing, our support groups are expanding, and we are getting so much interest it's hard to keep up with everything! We are starting to make plans for the DDNC and plan to attend DDW again this year. There is so much I can't remember! Things are moving in the right direction and it's exciting to see patients come together and have such a desire to help us increase awareness of DTP! I'm so ready to be healthier so I can spend more time focusing on G-PACT and getting back to my more normal life at church, with friends, and the other things I enjoy doing.
Saturday, October 16, 2010
Day 10
I've been in a skilled nursing facility now for 10 days. I admit, the first few days were REALLY REALLY tough as reality hit and I entered into a new, unknown environment a good distance from home. Spruce Manor is about an hour and 15 minutes away from my home so my family can only visit me on the weekend. That's been tough, but I have learned how to deal with it. After PT and OT I am so tired I tend to sleep most of the rest of the day anyway.
I'm glad I came fully prepared. I brought my TV (they don't have them here automatically), my Wii, iPhone, of course (don't even have phone hookups in room!), lots of books, drawing paper, laptop, DVD's, clothes, and stuff to make the place more homey to me. They have given me a semi-private room with one bed blocked so no one else can stay with me in order to cut down on my odds of getting an infection. That's a good thing because the place isn't very clean. Some basic sanitary measures are not being taken. When I first arrived, the nurses knew little about someone as complicated as me and I had to put up a bit of a stink to get them to pay attention and not screw me up more. Now they wash their hands before and after, clean my room every day, wear gloves around me, know to use sterile water through my tube, and have given me permission to NOT go to the shower on "shower days" because of the risk of catching something there. Instead I stay in my room and wash my hair in the sink. They provided me with hand sanitizer for my own hands, and are paying much better attention to cleanliness. They are learning my meds well and now know my routine of flushing my tube, and are looking into getting me my own refrigerator since I eat small snacks all day and someone keeps taking my special GP/CIP/DS food, etc. They are really staying on top of me now, in some cases, more than the hospital does! They have made A LOT of accommodations so I really appreciate that. Of course, I have to find something to complain about with any hospital stay!
I had called in advance to ask if they had WiFi access, which they don't. I basically iPhoned it for a couple of days until I met Rick. He's 50 and a techie. He told me what he does to connect and has let me borrow his laptop connect card to get online. Since I'm going to be stuck here for a few more weeks, I'm going to get me one too so I can stay connected.
We looked into transferring me out to a cleaner environment closer to home, but nothing has opened up under Medicare facilities, especially for someone with my complex medical needs. I'm actually ok with it. I've adjusted to the environment and made some friends to help. They are trying so hard now to meet my needs. In some ways, I'm kind of spoiled for a place like this. Private room...no one screaming over my TV, temp as I like it (cold most say!), all my techie stuff, dietitian very helpful in getting what I need now, nice window view. If it weren't for a fear of cleanliness still and distance from home, it's not much worse or different than being in a regular hospital. Most awkward thing is the fact that there are so many geriatrics w/ dementia and other things I'm not as used to being around...I'm used to tubes, IV's, catheters, etc, but it's a different type of population and kind of sadder. The PT/OT hasn't been as good as I had hoped, but they do feel like I have made some progress. I would be leaving AMA if I left right now and Medicare wouldn't cover this past week. So, I'm gonna stick it out. I want to anyway. I do want the help to get back on my feet and be more independent. They plan to show me some energy conservation techniques for times I am too tired to even get out of bed, or I get so weak and tired while doing things. I read the list they left though and I already do all of those things!
On Saturday night I had a little mishap when my j-tube fell out. This isn't uncommon, but Spruce Manor didn't have the size tube I needed so I got an "exciting" ride in an ambulance to the Reading Hospital ER for a tube change. Reading Hospital was actually impressive for what I saw them for. Knew what they were doing, unlike other ER's I have been to for tube changes.
I'll be here probably a couple more weeks at least. I'd like to be out for my b-day, or at least be allowed out for a b-day break. My mom is coming by Saturday to do my laundry so it doesn't get lost w/ other resident clothing, and to bring me more junk for this upcoming week. I really hope this pays off in the end. It's been a tough ordeal, but I'm a lot tougher and I can get through this too. It hasn't been all bad. I've heard some good historical stories from other people. It's just kind of hard to "work out" with people three times my age! Makes me feel...well...99 years old! I probably do for real feel 99 when it comes to pain and stiffness and general mobility. But I'm working on that. It's hard to know how much is nutritional, physical conditions that cause this, or anything I can really change much based on the cause. It's definitely a combo, just not sure what is contributing the most.
I'm glad I came fully prepared. I brought my TV (they don't have them here automatically), my Wii, iPhone, of course (don't even have phone hookups in room!), lots of books, drawing paper, laptop, DVD's, clothes, and stuff to make the place more homey to me. They have given me a semi-private room with one bed blocked so no one else can stay with me in order to cut down on my odds of getting an infection. That's a good thing because the place isn't very clean. Some basic sanitary measures are not being taken. When I first arrived, the nurses knew little about someone as complicated as me and I had to put up a bit of a stink to get them to pay attention and not screw me up more. Now they wash their hands before and after, clean my room every day, wear gloves around me, know to use sterile water through my tube, and have given me permission to NOT go to the shower on "shower days" because of the risk of catching something there. Instead I stay in my room and wash my hair in the sink. They provided me with hand sanitizer for my own hands, and are paying much better attention to cleanliness. They are learning my meds well and now know my routine of flushing my tube, and are looking into getting me my own refrigerator since I eat small snacks all day and someone keeps taking my special GP/CIP/DS food, etc. They are really staying on top of me now, in some cases, more than the hospital does! They have made A LOT of accommodations so I really appreciate that. Of course, I have to find something to complain about with any hospital stay!
I had called in advance to ask if they had WiFi access, which they don't. I basically iPhoned it for a couple of days until I met Rick. He's 50 and a techie. He told me what he does to connect and has let me borrow his laptop connect card to get online. Since I'm going to be stuck here for a few more weeks, I'm going to get me one too so I can stay connected.
We looked into transferring me out to a cleaner environment closer to home, but nothing has opened up under Medicare facilities, especially for someone with my complex medical needs. I'm actually ok with it. I've adjusted to the environment and made some friends to help. They are trying so hard now to meet my needs. In some ways, I'm kind of spoiled for a place like this. Private room...no one screaming over my TV, temp as I like it (cold most say!), all my techie stuff, dietitian very helpful in getting what I need now, nice window view. If it weren't for a fear of cleanliness still and distance from home, it's not much worse or different than being in a regular hospital. Most awkward thing is the fact that there are so many geriatrics w/ dementia and other things I'm not as used to being around...I'm used to tubes, IV's, catheters, etc, but it's a different type of population and kind of sadder. The PT/OT hasn't been as good as I had hoped, but they do feel like I have made some progress. I would be leaving AMA if I left right now and Medicare wouldn't cover this past week. So, I'm gonna stick it out. I want to anyway. I do want the help to get back on my feet and be more independent. They plan to show me some energy conservation techniques for times I am too tired to even get out of bed, or I get so weak and tired while doing things. I read the list they left though and I already do all of those things!
On Saturday night I had a little mishap when my j-tube fell out. This isn't uncommon, but Spruce Manor didn't have the size tube I needed so I got an "exciting" ride in an ambulance to the Reading Hospital ER for a tube change. Reading Hospital was actually impressive for what I saw them for. Knew what they were doing, unlike other ER's I have been to for tube changes.
I'll be here probably a couple more weeks at least. I'd like to be out for my b-day, or at least be allowed out for a b-day break. My mom is coming by Saturday to do my laundry so it doesn't get lost w/ other resident clothing, and to bring me more junk for this upcoming week. I really hope this pays off in the end. It's been a tough ordeal, but I'm a lot tougher and I can get through this too. It hasn't been all bad. I've heard some good historical stories from other people. It's just kind of hard to "work out" with people three times my age! Makes me feel...well...99 years old! I probably do for real feel 99 when it comes to pain and stiffness and general mobility. But I'm working on that. It's hard to know how much is nutritional, physical conditions that cause this, or anything I can really change much based on the cause. It's definitely a combo, just not sure what is contributing the most.
Thursday, October 7, 2010
A new journey begins...
On Thursday afternoon I’m going to start in patient rehab at a skilled nursing facility, at
Spruce Manor Nursing & Rehabilitation
220 South 4th Avenue and Spruce Street
West Reading, PA 19611
Phone (610) 374-5175
http://www.extendicareus.com/sprucemanor/
I’m encouraged, but nervous too. Nervous mostly because it’s so far away from family and friends and I’m not sure exactly what to expect. However, I’m also encouraged because it seems like they will really be able to help me a lot and meet so many of the needs I have all at once rather than the hospital which only does short term fixes based on the problem you are having at the time. It’s been a long time coming. I’ve fallen a lot and surprised I haven’t broken anything yet. In January I hit the ground hard in Target, in June it was Giant, and in the Salvation Army once my whole body went stiff (paralysis), but fortunately I was holding on to the cart and it passed before I collapsed. Lately, I’ve had to go back to using scooters in stores in order to shop. I usually need my walker when I am out, but unfortunately don’t have access to it as it is in the attic and we can’t get up there! So, I’ve just been careful and holding on to things. I‘ve fallen at home quite a bit. I’ve also been close a lot, and stairs have become almost impossible. I rarely go upstairs anymore because it is just way too tough. I Have soooooo much body pain, stiffness, and temporary paralysis sometimes. Those may be medical conditions (the paralysis especially) that can’t be helped by rehab, but I imagine the pain and stiffness can be improved with better nutrition and some good rehab. If you don’t remember, Dr. Kareem told me over a year ago that I am now in a palliative state in my life which, in this instance, means learning how to live with my conditions as normally as possible because he knows I will never be cured or well enough to live a normal life. I’ve tried on my own by increasing life activities and stuff to be “normal” but the fact is, my medical conditions just keep bringing me down and over time I have gotten into a state where I have days I feel like I did pre-transplant and can’t even get out of bed and I do NOT want to go there. I want to nip this before I get that bad off again.
This facility I am going to may be far, but I think it is worth it. I am quite impressed with how careful they are being, from reading the info on their site, and in speaking with the admissions director there. This is what they can/will provide for me:
-Physical rehab- getting me walking better so I don’t fall or wobble so much, getting upper body strength improved, overall rehab…just feeling physically stronger all over. Right now I tire out so easily that I have trouble showering, getting dressed, and get up as little as possible because it takes so much energy. That’s a bad spiral because the less I do, the worse it makes that. However, I have still been getting out occasionally to do some things which has been good, but I’ve also had to cut back on a lot of things I love so much (like working in the wheelhouse, social activities, etc) because I just don’t have the strength.
-nutrition therapy/digestive care- tube feedings still, but also can have a dietitian involved to help me work on some sensible diet, if possible (I want to try to retrain my gut and see if I can get more down), and at least be involved in perhaps helping me work through some of the digestive issues. I want to see if possible we can work on speeding up my tube feeds so I can get them just overnight and balance it out with better eating.
-pain management- I have SSSOOO much pain and stiffness all the time in my body. They can, hopefully, help me figure out the right medication protocol and with the rehab on top of that, perhaps I won’t have such a tough winter with pain issues which often keep me in bed
-better independent living- I have trouble so much now with taking care of my own space…even the simplest tasks are so challenging and tiring for me that I tend to let things pile up and don’t do well getting my laundry done. I hate it. Their ultimate goal is to get people in shape so they can go home and be independent and care for themselves.
When I go in on Thursday, I will meet with someone who will talk to me about my individual goals and set a plan of care. I’ll discuss what I need and where I want to be to come back home and be able to function more normally and independently. I’m excited about the possibility of getting things under better control overall. If they can help me get stronger, get pain under control, and get me better nutrition, whether through tube feeds increased or a combo of eating and tube feeds, then hopefully I can maintain the strength I get back through rehab once I leave. I’ve done outpatient PT unsuccessfully before because the other issues weren’t addressed too. It usually helped short term, but in the end I just lost it all.
They are able to provide me with all of my meds (I sent them a list), my tube feeds, an uncommon one they said, and all other things I need. They are giving me a semi-private room, but blocking the other bed so I won’t have a roommate since they are worried about immune-suppression issues and all tx rooms at UPMC are private, in the ER I have to be in an isolated section, etc. So, that helps that I won’t be on someone else’s schedule too. They also work around your typical schedule, so if I feel better in the afternoon than mornings or evenings, they will work the care schedule around that. That’s good because I will do much better in rehab if they get me at my peak “well” time of day. Everything will be completely covered by Medicare and Medicaid they told me, so the financial aspect isn’t going to be a problem.
It looks like a nice place with a gazebo, fish pond, and a lot of activities…a rec room with air hockey (I love air hockey), pool table, and other games. Activities like cartoon art and some other things. The rooms look nice and not so hospital like. They encourage you to bring your own stuff to kind of personalize your room and make it feel homey…so Steelers gear packed! I am hoping to meet some other young adults and make some friends while I am there so it will make it easier to deal with.
I don’t know about internet access yet…I am calling in the morning to ask a few questions, but at least I have iPhone and can stay connected that way. I’ll also take some G-PACT work I need/want to do that I can do offline if I don’t have wifi access…I imagine these days most places do…but it may be something I’d have to pay for myself. I have to take my own TV, according to their website, unless that’s just for long term care patients and I’ll probably take my Wii to play Super Paper Mario and games like that I can, not like baseball, although maybe with rehab I will be able to play baseball on it eventually!
So, anyway, that’s the scoop. Please just pray for me that I will adjust easily, it will be successful, and things will go smoothly. Last week I was absolutely terrified about doing this because I have heard some scary things about Medicare/Medicaid SNF’s, but I feel so much better about the situation now. I don’t know why I ever question that God will provide for all my needs…He always has and I know He’s in control.
I’m totally going to miss my life and routine, my friends, family, and others, but hopefully this will help so I can be even more active once I am out. I don’t know how long I’ll be there, but I will stay until I’m ready to come home in good shape. Hopefully, I will be able to keep in touch pretty easily! Please call and text me (if u have my number), e-mail I can also get on my iPhone (preferably my hastonc@g-pact.org account because I have problems with bluelightning on my phone), or FB message me, but hopefully I will wifi access too. I’ll want the correspondence!!
Love and thanks to all for being supportive through this process. My doctor thinks worth a try and I can’t help but think it will help me out so much for the long-term.
Spruce Manor Nursing & Rehabilitation
220 South 4th Avenue and Spruce Street
West Reading, PA 19611
Phone (610) 374-5175
http://www.extendicareus.com/sprucemanor/
I’m encouraged, but nervous too. Nervous mostly because it’s so far away from family and friends and I’m not sure exactly what to expect. However, I’m also encouraged because it seems like they will really be able to help me a lot and meet so many of the needs I have all at once rather than the hospital which only does short term fixes based on the problem you are having at the time. It’s been a long time coming. I’ve fallen a lot and surprised I haven’t broken anything yet. In January I hit the ground hard in Target, in June it was Giant, and in the Salvation Army once my whole body went stiff (paralysis), but fortunately I was holding on to the cart and it passed before I collapsed. Lately, I’ve had to go back to using scooters in stores in order to shop. I usually need my walker when I am out, but unfortunately don’t have access to it as it is in the attic and we can’t get up there! So, I’ve just been careful and holding on to things. I‘ve fallen at home quite a bit. I’ve also been close a lot, and stairs have become almost impossible. I rarely go upstairs anymore because it is just way too tough. I Have soooooo much body pain, stiffness, and temporary paralysis sometimes. Those may be medical conditions (the paralysis especially) that can’t be helped by rehab, but I imagine the pain and stiffness can be improved with better nutrition and some good rehab. If you don’t remember, Dr. Kareem told me over a year ago that I am now in a palliative state in my life which, in this instance, means learning how to live with my conditions as normally as possible because he knows I will never be cured or well enough to live a normal life. I’ve tried on my own by increasing life activities and stuff to be “normal” but the fact is, my medical conditions just keep bringing me down and over time I have gotten into a state where I have days I feel like I did pre-transplant and can’t even get out of bed and I do NOT want to go there. I want to nip this before I get that bad off again.
This facility I am going to may be far, but I think it is worth it. I am quite impressed with how careful they are being, from reading the info on their site, and in speaking with the admissions director there. This is what they can/will provide for me:
-Physical rehab- getting me walking better so I don’t fall or wobble so much, getting upper body strength improved, overall rehab…just feeling physically stronger all over. Right now I tire out so easily that I have trouble showering, getting dressed, and get up as little as possible because it takes so much energy. That’s a bad spiral because the less I do, the worse it makes that. However, I have still been getting out occasionally to do some things which has been good, but I’ve also had to cut back on a lot of things I love so much (like working in the wheelhouse, social activities, etc) because I just don’t have the strength.
-nutrition therapy/digestive care- tube feedings still, but also can have a dietitian involved to help me work on some sensible diet, if possible (I want to try to retrain my gut and see if I can get more down), and at least be involved in perhaps helping me work through some of the digestive issues. I want to see if possible we can work on speeding up my tube feeds so I can get them just overnight and balance it out with better eating.
-pain management- I have SSSOOO much pain and stiffness all the time in my body. They can, hopefully, help me figure out the right medication protocol and with the rehab on top of that, perhaps I won’t have such a tough winter with pain issues which often keep me in bed
-better independent living- I have trouble so much now with taking care of my own space…even the simplest tasks are so challenging and tiring for me that I tend to let things pile up and don’t do well getting my laundry done. I hate it. Their ultimate goal is to get people in shape so they can go home and be independent and care for themselves.
When I go in on Thursday, I will meet with someone who will talk to me about my individual goals and set a plan of care. I’ll discuss what I need and where I want to be to come back home and be able to function more normally and independently. I’m excited about the possibility of getting things under better control overall. If they can help me get stronger, get pain under control, and get me better nutrition, whether through tube feeds increased or a combo of eating and tube feeds, then hopefully I can maintain the strength I get back through rehab once I leave. I’ve done outpatient PT unsuccessfully before because the other issues weren’t addressed too. It usually helped short term, but in the end I just lost it all.
They are able to provide me with all of my meds (I sent them a list), my tube feeds, an uncommon one they said, and all other things I need. They are giving me a semi-private room, but blocking the other bed so I won’t have a roommate since they are worried about immune-suppression issues and all tx rooms at UPMC are private, in the ER I have to be in an isolated section, etc. So, that helps that I won’t be on someone else’s schedule too. They also work around your typical schedule, so if I feel better in the afternoon than mornings or evenings, they will work the care schedule around that. That’s good because I will do much better in rehab if they get me at my peak “well” time of day. Everything will be completely covered by Medicare and Medicaid they told me, so the financial aspect isn’t going to be a problem.
It looks like a nice place with a gazebo, fish pond, and a lot of activities…a rec room with air hockey (I love air hockey), pool table, and other games. Activities like cartoon art and some other things. The rooms look nice and not so hospital like. They encourage you to bring your own stuff to kind of personalize your room and make it feel homey…so Steelers gear packed! I am hoping to meet some other young adults and make some friends while I am there so it will make it easier to deal with.
I don’t know about internet access yet…I am calling in the morning to ask a few questions, but at least I have iPhone and can stay connected that way. I’ll also take some G-PACT work I need/want to do that I can do offline if I don’t have wifi access…I imagine these days most places do…but it may be something I’d have to pay for myself. I have to take my own TV, according to their website, unless that’s just for long term care patients and I’ll probably take my Wii to play Super Paper Mario and games like that I can, not like baseball, although maybe with rehab I will be able to play baseball on it eventually!
So, anyway, that’s the scoop. Please just pray for me that I will adjust easily, it will be successful, and things will go smoothly. Last week I was absolutely terrified about doing this because I have heard some scary things about Medicare/Medicaid SNF’s, but I feel so much better about the situation now. I don’t know why I ever question that God will provide for all my needs…He always has and I know He’s in control.
I’m totally going to miss my life and routine, my friends, family, and others, but hopefully this will help so I can be even more active once I am out. I don’t know how long I’ll be there, but I will stay until I’m ready to come home in good shape. Hopefully, I will be able to keep in touch pretty easily! Please call and text me (if u have my number), e-mail I can also get on my iPhone (preferably my hastonc@g-pact.org account because I have problems with bluelightning on my phone), or FB message me, but hopefully I will wifi access too. I’ll want the correspondence!!
Love and thanks to all for being supportive through this process. My doctor thinks worth a try and I can’t help but think it will help me out so much for the long-term.
Saturday, October 2, 2010
Following Christ- my story of "knowing" but not really "knowing"
For those of you who have known me for life, this will be surprising. I'm not sure what happened in my life. I grew up believing in God and never doubted His existence, but I don't feel like I ever made the fully informed decision to follow Christ. I walked the walk and knew the talk. I was well behaved, but my heart was never in my faith and I never had the passion or love for God or others that I should have had. I had some traumatic experiences post-transplant, as mentioned in my story below, that brought me flat on my face. I had been struggling and came to the realization that I truly had never placed my life fully in His hands.
I don't know if I became a Christian at the age of four and just never developed a relationship with Jesus or if it was not until after my transplant after my traumatic summer. All I know is something happened to me in August 2006 that totally turned my life around and I haven't been the same since. I had times growing up where I felt like God was guiding me and in my life, but overall I kind of shut Him out and relied on myself. This has been a hard thing for me to share and be open about because it has been assumed my whole life that I was a Christian, even by myself. I didn't come to the realization that I might not be until I couldn't feel him with me during my time of greatest need. I wasn't able to connect with Him until I asked Him to come rescue me and forgive me for everything and committed everything to Him. Even though difficult to admit I may not have become a Christian until the age of 28 when always assumed otherwise, this has been an important step to me in sharing my story is so important to reach out to others. It was not a decision I made lightly on a whim. I had been thinking about it for years. I wanted to make sure that the decision to get baptized was mine, I understood the stand I was taking this time, and that no one had an influence on the decision- I needed to make it alone to know that I was following God's command to be baptized in obedience to Him. I am not ashamed of the gospel!
The fact is, it doesn't matter WHEN I became a follower of Christ. The important thing is I know NOW for certain and have no doubts. I've been confused about this for a long time...was I a believer who just fell backwards and got so far away from my Savior that I just never felt close to Him? Or did I never give Him my life in the first place? At the age of four, it's hard to tell if you've truly had a life change. But, my passion is strong and it drives me in everything I do. I am not the same person I was before. God is amazing and there is no doubt He exists and is very, very real and loves me and you so much!
The following story was read as I pinned my message to Jesus on the cross, walked across stage with my dad who has played a large role in my spiritual growth/salvation regardless when it was, and then stood in the nice warm pool. I shivered all the way to the bathroom to change clothes. I did NOT want to get out! Lucky Mike who got to stay in there for most of the service!
Ironically, two of my close friends also decided, independently, to get baptized on the same day. Then we found out we had even picked the same service! It was cool to share the day with others who have also had a spiritual influence on me and we are doing life together.
For those of you who may not know, Baptism is a public way of telling everyone that I am a follower of Christ and have fully dedicated my life to serving Him in whatever capacity He has for me.
The story as read during baptism:
I’m the Founder and President of the Gastroparesis Patient Association for Cures and Treatments. G-PACT is a non-profit increasing awareness of gastroparesis and chronic intestinal pseudo-obstruction. I have struggled with these conditions for 16 years. I also volunteer with the kidcrew in The Wheelhouse and do office work for LCBC. I’m involved in a singles Life Group, am a rabid Steelers fan, and edit books my dad develops on leading others to Christ.
When I was four I prayed to trust Jesus. I was baptized, but I didn’t understand the significance. I never felt much love for others and was selfish. I didn’t rely on God to get me through tough physical challenges. I never truly felt His presence in my life.
On March 13, 2006 I received the gift of life when I survived a five organ transplant at the University of Pittsburgh. I encountered problems after the transplant which left me in desperation. No one understood what I was dealing with and I felt completely alone. My dad realized I was struggling and he took me through the first discipleship book in the series I now edit. In August of 2006, I recognized the sacrifice Jesus had made for me. Then I made the informed decision to be a fully devoted follower of Christ.
When I trusted Jesus, there was instant peace. He calmed my fears. I felt like my prayers actually went somewhere. I knew then that, no matter what, I was going to be ok whether on earth or in heaven.
Now I am passionate about connecting others to Jesus through G-PACT, LCBC, life example, and sharing my story. I don’t fear death and recognize the importance of living every day to the fullest. My life has been spared for a purpose. God has been doing incredible things and he has a very important plan for me.
I want to be baptized today because I want to express my commitment of two new lives to Christ. Last week I celebrated the four year anniversary of my new physical life as a recipient of a new digestive tract! Without that new physical life, I would not be celebrating my new spiritual life as a fully-devoted follower of Christ today.
Baptized March 23, 2010 at LCBC Harrisburg on Chambers Hill Road
Pastor: Mike Albon
I don't know if I became a Christian at the age of four and just never developed a relationship with Jesus or if it was not until after my transplant after my traumatic summer. All I know is something happened to me in August 2006 that totally turned my life around and I haven't been the same since. I had times growing up where I felt like God was guiding me and in my life, but overall I kind of shut Him out and relied on myself. This has been a hard thing for me to share and be open about because it has been assumed my whole life that I was a Christian, even by myself. I didn't come to the realization that I might not be until I couldn't feel him with me during my time of greatest need. I wasn't able to connect with Him until I asked Him to come rescue me and forgive me for everything and committed everything to Him. Even though difficult to admit I may not have become a Christian until the age of 28 when always assumed otherwise, this has been an important step to me in sharing my story is so important to reach out to others. It was not a decision I made lightly on a whim. I had been thinking about it for years. I wanted to make sure that the decision to get baptized was mine, I understood the stand I was taking this time, and that no one had an influence on the decision- I needed to make it alone to know that I was following God's command to be baptized in obedience to Him. I am not ashamed of the gospel!
The fact is, it doesn't matter WHEN I became a follower of Christ. The important thing is I know NOW for certain and have no doubts. I've been confused about this for a long time...was I a believer who just fell backwards and got so far away from my Savior that I just never felt close to Him? Or did I never give Him my life in the first place? At the age of four, it's hard to tell if you've truly had a life change. But, my passion is strong and it drives me in everything I do. I am not the same person I was before. God is amazing and there is no doubt He exists and is very, very real and loves me and you so much!
The following story was read as I pinned my message to Jesus on the cross, walked across stage with my dad who has played a large role in my spiritual growth/salvation regardless when it was, and then stood in the nice warm pool. I shivered all the way to the bathroom to change clothes. I did NOT want to get out! Lucky Mike who got to stay in there for most of the service!
Ironically, two of my close friends also decided, independently, to get baptized on the same day. Then we found out we had even picked the same service! It was cool to share the day with others who have also had a spiritual influence on me and we are doing life together.
For those of you who may not know, Baptism is a public way of telling everyone that I am a follower of Christ and have fully dedicated my life to serving Him in whatever capacity He has for me.
The story as read during baptism:
I’m the Founder and President of the Gastroparesis Patient Association for Cures and Treatments. G-PACT is a non-profit increasing awareness of gastroparesis and chronic intestinal pseudo-obstruction. I have struggled with these conditions for 16 years. I also volunteer with the kidcrew in The Wheelhouse and do office work for LCBC. I’m involved in a singles Life Group, am a rabid Steelers fan, and edit books my dad develops on leading others to Christ.
When I was four I prayed to trust Jesus. I was baptized, but I didn’t understand the significance. I never felt much love for others and was selfish. I didn’t rely on God to get me through tough physical challenges. I never truly felt His presence in my life.
On March 13, 2006 I received the gift of life when I survived a five organ transplant at the University of Pittsburgh. I encountered problems after the transplant which left me in desperation. No one understood what I was dealing with and I felt completely alone. My dad realized I was struggling and he took me through the first discipleship book in the series I now edit. In August of 2006, I recognized the sacrifice Jesus had made for me. Then I made the informed decision to be a fully devoted follower of Christ.
When I trusted Jesus, there was instant peace. He calmed my fears. I felt like my prayers actually went somewhere. I knew then that, no matter what, I was going to be ok whether on earth or in heaven.
Now I am passionate about connecting others to Jesus through G-PACT, LCBC, life example, and sharing my story. I don’t fear death and recognize the importance of living every day to the fullest. My life has been spared for a purpose. God has been doing incredible things and he has a very important plan for me.
I want to be baptized today because I want to express my commitment of two new lives to Christ. Last week I celebrated the four year anniversary of my new physical life as a recipient of a new digestive tract! Without that new physical life, I would not be celebrating my new spiritual life as a fully-devoted follower of Christ today.
Baptized March 23, 2010 at LCBC Harrisburg on Chambers Hill Road
Pastor: Mike Albon
Decision made, process started...
The decision has been made. I will be going into a skilled nursing facility sometime in the next few days. As opposed to a rehab hospital, in which the therapy is really intense, they feel I will do best in a nursing facility for starters, especially so they can then deal more with the medical/nutritional issues at the same time. The rehab will be easier on me until I get stronger. I'm scared. I've heard some horror stories about SNF, but am trying to ease those fears through a variety of ways, one being that I am detailing all my care on paper for them so they know exactly how I do things at home. Small bowel transplant patients are complicated and it's vital that they stay on top of that part too. Fortunately, I am smart and able to advocate for myself when needed. I will ask to be transferred if I end up in a bad location that won't cooperate with my needs.
My parents left town today. I will be as careful as I can be until I am able to get into a safer environment with some assistance. I do have friends and family who can help if I get in a real bind.
I'm praying that my fears will be eased...this is kind of a scary thing for me to go to a skilled nursing facility. I have heard some horror stories. I hope I will be able to make some friends my age there to help me get through it. My friends in Pitt really help me cope when I am there.
Also, praying for safety with the medical side of my care...that they will pay attention to my needs and listen to what I tell them when it comes to my care. My goal is to get physically stronger in hopes that I will also get nutritionally more stable and be able to eat better. People know it's the right thing for me to do and are happy my docs are pursuing it...but it's a new phase for me and I'm just not sure what to expect.
My parents left town today. I will be as careful as I can be until I am able to get into a safer environment with some assistance. I do have friends and family who can help if I get in a real bind.
I'm praying that my fears will be eased...this is kind of a scary thing for me to go to a skilled nursing facility. I have heard some horror stories. I hope I will be able to make some friends my age there to help me get through it. My friends in Pitt really help me cope when I am there.
Also, praying for safety with the medical side of my care...that they will pay attention to my needs and listen to what I tell them when it comes to my care. My goal is to get physically stronger in hopes that I will also get nutritionally more stable and be able to eat better. People know it's the right thing for me to do and are happy my docs are pursuing it...but it's a new phase for me and I'm just not sure what to expect.
Inpatient Rehab thoughts
This is the latest-
I fell yesterday in my apartment and, fortunately, once again I didn’t break anything but am sore all over. I have near falls multiple times a day and I am struggling with weakness so much it’s hard for me to shower and even get dressed w/o falling. I am really starting to scare myself. It’s only a matter of time before I fall and do some serious damage. I had thought a week out I’d see improvement, and I know I’ve been through a lot, but I was already asking my dad to pull out my Blue Lightning jr. walker b4 the surgery and don’t see how if I was that weak before, how I can pull myself out of it now without assistance. Twenty days in the hospital takes a lot of out of you! I am still driving obviously, but that doesn’t require as much leg/body strength or balance, etc so driving doesn’t seem to be much of a problem. I take it slowly more because of being on some dopey meds still and my reaction rate is slower, but I have backed off on meds so my head is a bit clearer. I get scooter buggies when I have to shop (as I did pre and post tx) and just stay off my feet as much as I can doing other things and carry as little as possible around, but then that requires a lot of trips around the house and that’s hard to do as well. But, I can hardly get up and down stairs and once I am down on the floor, getting back up is a nightmare. Thankfully, I already had a hospital bed so at least I have assistance in that.
So, we are now considering the possibility of inpatient rehab since I am struggling to do the most basic things and my safety at home alone is questionable. I’m not going to UPMC for it. The only advantage there is they know how to deal more with the small bowel transplant patients where Hershey doesn’t, but they don’t have an exceptional rehab program and have even dropped some of my friends. Yes. Dropped them. The medical side of it is bad too…they don’t do well taking care of tx patients with meds and other issues that come up, so there’s really no advantage to going to Hershey or UPMC. Either way, I have to teach them.
This is up in the air right now still, but I would appreciate prayers as I talk to my docs about it and we make decisions…outpatient rehab is an option, but when you are to the level where I am and can hardly dress or shower myself, simple tasks in my apartment are challenging, and safety is in question even, inpatient may be best for starters. The problem is, rehab isn’t going to be very successful until my nutrition status improves too, but by doing inpatient we can work on both at the same time while I stay safer and have help I need because it’s going to take a while to get my nutrition on track. Still a bit wacky from obstruction.
Thanks for continuing to pray for me as I work through all this and try to figure out the best way to get back to my baseline at the very least.
I fell yesterday in my apartment and, fortunately, once again I didn’t break anything but am sore all over. I have near falls multiple times a day and I am struggling with weakness so much it’s hard for me to shower and even get dressed w/o falling. I am really starting to scare myself. It’s only a matter of time before I fall and do some serious damage. I had thought a week out I’d see improvement, and I know I’ve been through a lot, but I was already asking my dad to pull out my Blue Lightning jr. walker b4 the surgery and don’t see how if I was that weak before, how I can pull myself out of it now without assistance. Twenty days in the hospital takes a lot of out of you! I am still driving obviously, but that doesn’t require as much leg/body strength or balance, etc so driving doesn’t seem to be much of a problem. I take it slowly more because of being on some dopey meds still and my reaction rate is slower, but I have backed off on meds so my head is a bit clearer. I get scooter buggies when I have to shop (as I did pre and post tx) and just stay off my feet as much as I can doing other things and carry as little as possible around, but then that requires a lot of trips around the house and that’s hard to do as well. But, I can hardly get up and down stairs and once I am down on the floor, getting back up is a nightmare. Thankfully, I already had a hospital bed so at least I have assistance in that.
So, we are now considering the possibility of inpatient rehab since I am struggling to do the most basic things and my safety at home alone is questionable. I’m not going to UPMC for it. The only advantage there is they know how to deal more with the small bowel transplant patients where Hershey doesn’t, but they don’t have an exceptional rehab program and have even dropped some of my friends. Yes. Dropped them. The medical side of it is bad too…they don’t do well taking care of tx patients with meds and other issues that come up, so there’s really no advantage to going to Hershey or UPMC. Either way, I have to teach them.
This is up in the air right now still, but I would appreciate prayers as I talk to my docs about it and we make decisions…outpatient rehab is an option, but when you are to the level where I am and can hardly dress or shower myself, simple tasks in my apartment are challenging, and safety is in question even, inpatient may be best for starters. The problem is, rehab isn’t going to be very successful until my nutrition status improves too, but by doing inpatient we can work on both at the same time while I stay safer and have help I need because it’s going to take a while to get my nutrition on track. Still a bit wacky from obstruction.
Thanks for continuing to pray for me as I work through all this and try to figure out the best way to get back to my baseline at the very least.
Sept. 27
I’ve been struggling to keep people updated, outside of blurbs in FB, but I am able to write this summary up today. This gives you have a general idea what to pray for with me if you do, what’s been up and what is coming up in case u haven’t been able to follow things or are not on Facebook.
1. Surgery went well, tube in and working. I am having a really hard time getting my rate to a level which will allow me to maintain weight at this point. I need to get even higher than that to even start gaining anything. At this point I am still losing at times. Gaining weight on tube feeds is much more difficult than on TPN (IV junk), especially if the gut can only tolerate so much. Confirmed return of GP and CIP not surprising, but not encouraging. Biopsy of removed lymph node looked ok…a little inflammation and stuff, but nothing that would make them think I am in chronic rejection! =)
2. Recovered from bowel obstruction w/ no surgical intervention, but the effects of losing an extra couple of weeks without nutrition and the additional weeks in the hospital have made me extra physically weak too. I can hardly walk, stairs are almost impossible, curbs outside stores have almost brought me down a few times. I have to pull myself up stairs with the hand rails or crawl up, and I am loaded down with my tube feeding backpack and anything else I need to carry at the same time. It’s going to take a lot of either personal rehab at home using what I’ve learned over the years, or some outside rehab to get anywhere close to where I was before the surgery. I was bad off strength wise before surgery because I was almost to the point of using my walker again even before that. So, I have a long ways to go in that aspect, but better nutrition will also factor in once I can get that up. I’ve almost fallen many times already and was falling a lot before the surgery…in Target once, at Giant once, at home a lot. After my transplant when I came home I did fall and burst my head open, so it makes me nervous. I do have osteoporosis even worse now than then. I am also wobbly on my feet and lose my balance. This could be meds, weakness, neurological/neuromuscular issues, and/or a combo…but my fall risk is extremely high.
3. Potassium still running low w/ supplements. They’ve increased me to very high levels. Encouraged to start seeing my cardiologist at Hershey Medical Center again for more routine EKG’s again because of my history of cardiac arrest due to my long QT interval. Was not concerned as long as my potassium/nutrition was better, but with everything coming back, we have to be cautious again.
4. Mom said schedule appointment with the Mitochondrial Disease doctors to start pursuing that avenue as an explanation for all of my problems. If I do have a Mito, I may be on some meds that are actually contributing to my problems. So, I could do something to slow the progression down. This is a condition, if you didn’t know, which is genetic and ties all of my seemingly unrelated problems together. Apparently considered by Dr. Koch (greatest GI doc in the world) in the early 2000’s for me, but he never said anything b/c he didn’t think anything could be done AND it can be hard to diagnose. Told me he had considered it for me when I saw him at DDW in 2008 and brought it up on my own. Mito testing, however, is not often covered by insurance so I’d need to be able to get into a research study or something. UPMC has two top mito docs, rare docs to find…again, there is a reason my fam was moved to PA in 1995! I have always been the one to benefit the most from the move!
5. The arm that was beat up in the hospital is still very painful and unusable for labs for weeks, if not longer. I’m still in enough pain to take dilaudid at least twice a day which wears off quickly. If you know me much at all u know that I despise pain meds and I always have leftovers after surgeries because I just don’t take it! Other pain meds for the chronic pain is the same. More nausea meds still, so I’m kinda loopy between it all…in case u can’t tell!
6. I need to allow myself time to heal, but again, you all know me and I don’t like to do that. I just like to keep going and it’s a very healthy way to be…most of the time! But now my body is really dictating for me quite clearly what I can and can’t do...i.e. it literally won’t move sometimes or the pain or fatigue hits when I want to get up and do something stupid. I AM paying attention most of the time…I think…because I know I am slowing things down if I don’t. But I am frustrated! Driving some, but not much because of the meds and I’m trying to back off on those. It’s important for me to figure out the line between where I need to push in order to heal better. Sitting around at home all day, even doing things for G-PACT, isn’t good and won’t help me gain any physical strength. But doing TOO much that I create problems is a concern as well. So I am working on that line and trying to just take it day by day, even hour by hour.
LCBC’ers…I think Sunday’s sermon was meant for me. I do feel like things are out of control with my health and I can’t personally get them under control, but I keep trying. I need to just be still and let God on this one…and I do feel like I had been soooooo busy with G-PACT and other life activities that this is a time for me to get grounded again by being forced to slow down for a while, focus on my health a bit more, stop trying to save the entire world from their problems, and figure out a healthier way to move forward in the future and juggling the many things I want to do. The problem is I am passionate about everything and I want to do everything all the time. To top that off, I’m a perfectionist! Deadly…
1. Surgery went well, tube in and working. I am having a really hard time getting my rate to a level which will allow me to maintain weight at this point. I need to get even higher than that to even start gaining anything. At this point I am still losing at times. Gaining weight on tube feeds is much more difficult than on TPN (IV junk), especially if the gut can only tolerate so much. Confirmed return of GP and CIP not surprising, but not encouraging. Biopsy of removed lymph node looked ok…a little inflammation and stuff, but nothing that would make them think I am in chronic rejection! =)
2. Recovered from bowel obstruction w/ no surgical intervention, but the effects of losing an extra couple of weeks without nutrition and the additional weeks in the hospital have made me extra physically weak too. I can hardly walk, stairs are almost impossible, curbs outside stores have almost brought me down a few times. I have to pull myself up stairs with the hand rails or crawl up, and I am loaded down with my tube feeding backpack and anything else I need to carry at the same time. It’s going to take a lot of either personal rehab at home using what I’ve learned over the years, or some outside rehab to get anywhere close to where I was before the surgery. I was bad off strength wise before surgery because I was almost to the point of using my walker again even before that. So, I have a long ways to go in that aspect, but better nutrition will also factor in once I can get that up. I’ve almost fallen many times already and was falling a lot before the surgery…in Target once, at Giant once, at home a lot. After my transplant when I came home I did fall and burst my head open, so it makes me nervous. I do have osteoporosis even worse now than then. I am also wobbly on my feet and lose my balance. This could be meds, weakness, neurological/neuromuscular issues, and/or a combo…but my fall risk is extremely high.
3. Potassium still running low w/ supplements. They’ve increased me to very high levels. Encouraged to start seeing my cardiologist at Hershey Medical Center again for more routine EKG’s again because of my history of cardiac arrest due to my long QT interval. Was not concerned as long as my potassium/nutrition was better, but with everything coming back, we have to be cautious again.
4. Mom said schedule appointment with the Mitochondrial Disease doctors to start pursuing that avenue as an explanation for all of my problems. If I do have a Mito, I may be on some meds that are actually contributing to my problems. So, I could do something to slow the progression down. This is a condition, if you didn’t know, which is genetic and ties all of my seemingly unrelated problems together. Apparently considered by Dr. Koch (greatest GI doc in the world) in the early 2000’s for me, but he never said anything b/c he didn’t think anything could be done AND it can be hard to diagnose. Told me he had considered it for me when I saw him at DDW in 2008 and brought it up on my own. Mito testing, however, is not often covered by insurance so I’d need to be able to get into a research study or something. UPMC has two top mito docs, rare docs to find…again, there is a reason my fam was moved to PA in 1995! I have always been the one to benefit the most from the move!
5. The arm that was beat up in the hospital is still very painful and unusable for labs for weeks, if not longer. I’m still in enough pain to take dilaudid at least twice a day which wears off quickly. If you know me much at all u know that I despise pain meds and I always have leftovers after surgeries because I just don’t take it! Other pain meds for the chronic pain is the same. More nausea meds still, so I’m kinda loopy between it all…in case u can’t tell!
6. I need to allow myself time to heal, but again, you all know me and I don’t like to do that. I just like to keep going and it’s a very healthy way to be…most of the time! But now my body is really dictating for me quite clearly what I can and can’t do...i.e. it literally won’t move sometimes or the pain or fatigue hits when I want to get up and do something stupid. I AM paying attention most of the time…I think…because I know I am slowing things down if I don’t. But I am frustrated! Driving some, but not much because of the meds and I’m trying to back off on those. It’s important for me to figure out the line between where I need to push in order to heal better. Sitting around at home all day, even doing things for G-PACT, isn’t good and won’t help me gain any physical strength. But doing TOO much that I create problems is a concern as well. So I am working on that line and trying to just take it day by day, even hour by hour.
LCBC’ers…I think Sunday’s sermon was meant for me. I do feel like things are out of control with my health and I can’t personally get them under control, but I keep trying. I need to just be still and let God on this one…and I do feel like I had been soooooo busy with G-PACT and other life activities that this is a time for me to get grounded again by being forced to slow down for a while, focus on my health a bit more, stop trying to save the entire world from their problems, and figure out a healthier way to move forward in the future and juggling the many things I want to do. The problem is I am passionate about everything and I want to do everything all the time. To top that off, I’m a perfectionist! Deadly…
Thursday, September 2, 2010
It's Carissa this time. Thanks Celeste for your posts on Tuesday :)
Costa came in this morning and they pulled the NG tube out. That was a relief. I feel a lot better just from that hose removed. The NG is MUCH bigger than the NJ so it's even more annoying. He said I could have ice chips (I had asked last night if I could have SOMETHING because I was feeling sick from not eating and not getting tube feeds...weird how that is), told me to walk, blah blah.
Then Kareem came in later and he always changes everything around. He walked in and said "Why are you on so many antibiotics???!!! Are we trying to make you sick?" To which I responded..."I think so!" Then he saw my j-tube connected to a drainage bag and said "Why are you hooked up to that???" I'm like "Kareem, I don't know! I didn't do it!" He said "stop the antibiotics, stop the fluids, disconnect that j-tube from drainage, You're not two days post-transplant!" My response was, "that's fine with me!" He was upset that Costa had me on so much stuff. That's typical. Kareem is more aggressive, Costa is a lot more cautious, and Kareem is the boss so what he says is final!
I'm happy because these IV drugs make me feel horrible. The less I have to take, the better I feel and the less things I'm connected to, the more human I feel too! I'm still getting vancomycin 2x/day with IV benadryl and tylenol because I've been running a low grade fever all day and they want to knock any potential infections out before they really get started. They weren't able to find a spot for a central line in my neck, so they stuck it in my femoral. That's a scary spot because it's really unclean, not to mention a pain to access! The sooner they can pull it out the safer I will feel. Yeah, kind of running out of "real estate" as my nurse said when he saw that they had also stuck an IV line in my foot on Tuesday. They couldn't find a vein anywhere else. Never a fun experience. When they infiltrate, it feels like a sprained foot. Thankfully, this one was pulled out before I even woke up.
Today I got two runs of potassium, one of magnesium, one of calcium, and a unit of blood. They are starting me back on weekly Arinesp injections (helps body produce red blood cells) because my counts have been running low again. Hopefully that will help my energy levels.
Anywho...the fluids are still running at a fairly slow rate because I had some really bad nausea this afternoon after they pulled the NG and it wasn't suctioning the junk out of my gut anymore. My nurse said it's up to me if we keep the fluids going, but I haven't been drinking much at all. With no tube feeds, I think it's too early to stop them. They were going to start tube feeds tonight at a rate of 5cc's/hour, but they decided to wait until tomorrow morning to give my gut more time to wake up from the anesthesia. They said I could hook the j-tube back up to drain, but I didn't want to do that unless the nausea didn't ease up enough after a dose of phenergan. I feel better than this afternoon and tons better than yesterday. Hopefully tomorrow I'll start grazing again like I do and they can start the tube feeds up. They are going to use the same formula I have been using at home since they know I tolerate it ok. I am taking most meds orally now with the exception of phenergan (nausea), my cortef (steroids), and dilaudid (pain).
Overall, I'm doing well. I'm getting around on my own most of the time. I kind of freak my nurses out sometimes because I do things they think they should be helping me with. I just like to get things done and they are too slow getting here when I call!
Costa said biopsy results of my lymph node should be back early next week. Other than that, not much to report. Just trying to get things straightened out.
Oh, this is funny...Dr. Costa said they were really impressed with the placement of the NJ tube I came in with. He asked who did it, and I said Hershey Med. Then I realized that, yeah, Hershey got it down my nose, but they didn't get it in far enough because the next day I woke up coughing and with stuff in my throat and chest. So, instead of going back to the ER, I pushed it in the rest of the way myself...HA! I seriously should be a doctor...to impress these guys with any medical procedure says something! They ARE the best!
Costa came in this morning and they pulled the NG tube out. That was a relief. I feel a lot better just from that hose removed. The NG is MUCH bigger than the NJ so it's even more annoying. He said I could have ice chips (I had asked last night if I could have SOMETHING because I was feeling sick from not eating and not getting tube feeds...weird how that is), told me to walk, blah blah.
Then Kareem came in later and he always changes everything around. He walked in and said "Why are you on so many antibiotics???!!! Are we trying to make you sick?" To which I responded..."I think so!" Then he saw my j-tube connected to a drainage bag and said "Why are you hooked up to that???" I'm like "Kareem, I don't know! I didn't do it!" He said "stop the antibiotics, stop the fluids, disconnect that j-tube from drainage, You're not two days post-transplant!" My response was, "that's fine with me!" He was upset that Costa had me on so much stuff. That's typical. Kareem is more aggressive, Costa is a lot more cautious, and Kareem is the boss so what he says is final!
I'm happy because these IV drugs make me feel horrible. The less I have to take, the better I feel and the less things I'm connected to, the more human I feel too! I'm still getting vancomycin 2x/day with IV benadryl and tylenol because I've been running a low grade fever all day and they want to knock any potential infections out before they really get started. They weren't able to find a spot for a central line in my neck, so they stuck it in my femoral. That's a scary spot because it's really unclean, not to mention a pain to access! The sooner they can pull it out the safer I will feel. Yeah, kind of running out of "real estate" as my nurse said when he saw that they had also stuck an IV line in my foot on Tuesday. They couldn't find a vein anywhere else. Never a fun experience. When they infiltrate, it feels like a sprained foot. Thankfully, this one was pulled out before I even woke up.
Today I got two runs of potassium, one of magnesium, one of calcium, and a unit of blood. They are starting me back on weekly Arinesp injections (helps body produce red blood cells) because my counts have been running low again. Hopefully that will help my energy levels.
Anywho...the fluids are still running at a fairly slow rate because I had some really bad nausea this afternoon after they pulled the NG and it wasn't suctioning the junk out of my gut anymore. My nurse said it's up to me if we keep the fluids going, but I haven't been drinking much at all. With no tube feeds, I think it's too early to stop them. They were going to start tube feeds tonight at a rate of 5cc's/hour, but they decided to wait until tomorrow morning to give my gut more time to wake up from the anesthesia. They said I could hook the j-tube back up to drain, but I didn't want to do that unless the nausea didn't ease up enough after a dose of phenergan. I feel better than this afternoon and tons better than yesterday. Hopefully tomorrow I'll start grazing again like I do and they can start the tube feeds up. They are going to use the same formula I have been using at home since they know I tolerate it ok. I am taking most meds orally now with the exception of phenergan (nausea), my cortef (steroids), and dilaudid (pain).
Overall, I'm doing well. I'm getting around on my own most of the time. I kind of freak my nurses out sometimes because I do things they think they should be helping me with. I just like to get things done and they are too slow getting here when I call!
Costa said biopsy results of my lymph node should be back early next week. Other than that, not much to report. Just trying to get things straightened out.
Oh, this is funny...Dr. Costa said they were really impressed with the placement of the NJ tube I came in with. He asked who did it, and I said Hershey Med. Then I realized that, yeah, Hershey got it down my nose, but they didn't get it in far enough because the next day I woke up coughing and with stuff in my throat and chest. So, instead of going back to the ER, I pushed it in the rest of the way myself...HA! I seriously should be a doctor...to impress these guys with any medical procedure says something! They ARE the best!
Tuesday, August 31, 2010
The post-surgical news so far is good...
(Celeste, again...)
So far, everything I have heard regarding Carissa's post-surgical condition has been good. They were in the process of moving her to her room around dinner time this evening after having several post-surgical infusions (potassium and I'm not sure what else).
When I spoke with Mom around dinner time, she had only seen Carissa for a few minutes in a hallway. She said that her color looked good and overall she seemed about as well as could be expected at this point. While Kareem was able to place the j-tube, Carissa is not quite done being a "Scantephant". She still has an NJ (or NG, we're not sure which) tube. This is a new one that was placed while Carissa was sedated and Mom says it is a bit larger than what she's had for the last few months. We suspect that the purpose of this one is primarily drainage for the next few days, as has been typical following other surgeries she has ha in the past. Dr. Kareem said that he plans to begin feedings through the j-tube in a few days.
The great news is that Carissa is not having to go to the TICU! They are moving her to 11 North (we suspect 12 North is full) which is another floor dedicated to transplant patients. She will be so much happier there and it makes visiting much easier for Mom and Dad.
I suspect that Carissa will not be up for other visitors for a few days. So, if you are in the Pittsburgh area, please make sure you call and check before dropping by for a visit.
As there are details worth updating, we will make sure we post them here! Continue to pray for Carissa and for her protection from post-surgical complications, especially infection. Thank you so much!
So far, everything I have heard regarding Carissa's post-surgical condition has been good. They were in the process of moving her to her room around dinner time this evening after having several post-surgical infusions (potassium and I'm not sure what else).
When I spoke with Mom around dinner time, she had only seen Carissa for a few minutes in a hallway. She said that her color looked good and overall she seemed about as well as could be expected at this point. While Kareem was able to place the j-tube, Carissa is not quite done being a "Scantephant". She still has an NJ (or NG, we're not sure which) tube. This is a new one that was placed while Carissa was sedated and Mom says it is a bit larger than what she's had for the last few months. We suspect that the purpose of this one is primarily drainage for the next few days, as has been typical following other surgeries she has ha in the past. Dr. Kareem said that he plans to begin feedings through the j-tube in a few days.
The great news is that Carissa is not having to go to the TICU! They are moving her to 11 North (we suspect 12 North is full) which is another floor dedicated to transplant patients. She will be so much happier there and it makes visiting much easier for Mom and Dad.
I suspect that Carissa will not be up for other visitors for a few days. So, if you are in the Pittsburgh area, please make sure you call and check before dropping by for a visit.
As there are details worth updating, we will make sure we post them here! Continue to pray for Carissa and for her protection from post-surgical complications, especially infection. Thank you so much!
Carissa is Out of Surgery
(Celeste, again...)
I just spoke with my Dad who informed me that Carissa is now out of surgery! She has been out for about an hour already. From what we understand so far, they found far less adhesions than they expected, which made the surgery go much more quickly that we expected. So, that's good news. Kareem was also able to successfully place the j-tube.
Dr. Kareem did a biopsy of the stomach and duodenum. We are not certain yet regarding a biopsy of the small bowel, but it sounds like he may have been able to avoid doing the resection of the bowel for that biopsy - but we are not certain of that information. Kareem indicated that he examined a few other things more carefully as well while he was performing the surgery, but we don't yet fully know the details of any of these things.
Mom and Dad have not yet heard yet whether Carissa will be going to the Transplant ICU or if she will be headed to 12 North - the normal floor of the hospital for transplant patients. Carissa was certainly hoping to go straight to 12 North, so we're hoping that will be the case. However, spending a few days in the TICU is still a possibility. We'll let you know once we've been informed where she is going after she gets out of recovery.
Thank you for your continued prayers. The Lord has protected Carissa during the course of the surgery, but it's likely that she will still have a lengthy recovery. Please pray that she will be protected from post-surgical complications including infections.
We will update further as more information becomes available.
I just spoke with my Dad who informed me that Carissa is now out of surgery! She has been out for about an hour already. From what we understand so far, they found far less adhesions than they expected, which made the surgery go much more quickly that we expected. So, that's good news. Kareem was also able to successfully place the j-tube.
Dr. Kareem did a biopsy of the stomach and duodenum. We are not certain yet regarding a biopsy of the small bowel, but it sounds like he may have been able to avoid doing the resection of the bowel for that biopsy - but we are not certain of that information. Kareem indicated that he examined a few other things more carefully as well while he was performing the surgery, but we don't yet fully know the details of any of these things.
Mom and Dad have not yet heard yet whether Carissa will be going to the Transplant ICU or if she will be headed to 12 North - the normal floor of the hospital for transplant patients. Carissa was certainly hoping to go straight to 12 North, so we're hoping that will be the case. However, spending a few days in the TICU is still a possibility. We'll let you know once we've been informed where she is going after she gets out of recovery.
Thank you for your continued prayers. The Lord has protected Carissa during the course of the surgery, but it's likely that she will still have a lengthy recovery. Please pray that she will be protected from post-surgical complications including infections.
We will update further as more information becomes available.
Update on Surgery
(Celeste posting, again...)
I just receive a call from Mom that she was just informed that the surgery didn't actually begin until 9:20 am. It is very common for us to receive mixed information during the course of the surgery, especially regarding when the surgery began and when it ends. With this much delayed start to the surgery, it will likely be sometime this afternoon until we have more information. I will update again as soon as we hear something else.
Please continue praying for Carissa during this surgery. As you know, she's been weak and any surgery is very risky for her. Pray for Dr. Kareem as he performs the surgery. As Carissa mentioned in yesterday's post, Kareem has back troubles that make it difficult for him to perform lengthy surgeries. However, he was insistent that he be the one to perform this surgery. We know that she is in the best possible human hands and pray that God's hands are guiding Kareem's.
Dad is on his way to Pittsburgh and should be arriving very soon to join Mom. Pray for his safe travel and for Mom and Dad while they wait for more updates.
We will provide more information as soon as it is available.
I just receive a call from Mom that she was just informed that the surgery didn't actually begin until 9:20 am. It is very common for us to receive mixed information during the course of the surgery, especially regarding when the surgery began and when it ends. With this much delayed start to the surgery, it will likely be sometime this afternoon until we have more information. I will update again as soon as we hear something else.
Please continue praying for Carissa during this surgery. As you know, she's been weak and any surgery is very risky for her. Pray for Dr. Kareem as he performs the surgery. As Carissa mentioned in yesterday's post, Kareem has back troubles that make it difficult for him to perform lengthy surgeries. However, he was insistent that he be the one to perform this surgery. We know that she is in the best possible human hands and pray that God's hands are guiding Kareem's.
Dad is on his way to Pittsburgh and should be arriving very soon to join Mom. Pray for his safe travel and for Mom and Dad while they wait for more updates.
We will provide more information as soon as it is available.
Carissa is in Surgery
This is Carissa's little sister, Celeste, just posting a very short update at this point.
Carissa is in surgery now. The surgery was originally planned to begin at 6:00 am. As is typical in these situations, the surgery was delayed and was rescheduled to begin at 7:15 am. Mom is in the surgical waiting area where she will only receive the most basic updates. However, this is an improvement over previous surgical experiences we have experienced. Carissa (and other patients) has been assigned a number. The number displays on a screen that lists her current status with the most basic information (in pre-op, in surgery, in recovery). Mom was told that the surgery is expected to last approximately 3 hours, but we know that can vary tremendously based on what Kareem finds. At the very earliest, we expect we may know more around lunch time.
Please continue to be praying for Carissa, Kareem and our family during this time.
We will update more as soon as more information is available.
Carissa is in surgery now. The surgery was originally planned to begin at 6:00 am. As is typical in these situations, the surgery was delayed and was rescheduled to begin at 7:15 am. Mom is in the surgical waiting area where she will only receive the most basic updates. However, this is an improvement over previous surgical experiences we have experienced. Carissa (and other patients) has been assigned a number. The number displays on a screen that lists her current status with the most basic information (in pre-op, in surgery, in recovery). Mom was told that the surgery is expected to last approximately 3 hours, but we know that can vary tremendously based on what Kareem finds. At the very earliest, we expect we may know more around lunch time.
Please continue to be praying for Carissa, Kareem and our family during this time.
We will update more as soon as more information is available.
Monday, August 30, 2010
Before the chop chop chop info
I'm scheduled to have surgery at 6 AM tomorrow. I am supposed to be at the hospital by 5 AM. UGH. Good thing I get to just go back to sleep! Of course, that's after a zillion questions that I can't remember the answers to that early in the morning and have already been asked 18 x...even just today!
My blood counts were really low today so they sent me to 7W for a unit and have put four more on reserve for tomorrow. I knew I was tired and weak, but figured it was all related to the craziness I brought on myself the past few weeks with DTP Awareness Week for G-PACT. They also did an EKG because of my history of torsades (cardiac arrest).
DTP Awareness Week was a great success, especially considering it's the first time we did it! We celebrated our nine year anniversary on August 23! Nine tough years of fighting, discouraging a lot of times, but encouraging a lot of times too...especially recently as we have been making a bit more progress and have had some pretty major accomplishments. We are only getting positive feedback from awareness week. We pulled off five successful webinars, a lot of awareness activities, a balloon release awareness event which was really cool as patients nationwide released balloons into the air with notes attached about DTP and where to go for more info. It's our hope that these will be found by people and they will get in touch with us saying they learned more. If nothing else, it shows that even though we are scattered throughout the nation, we can all stand in solidarity in fighting this through awareness.
We also held a raffle for a messenger bag and a tote bag, two different contests for people to win a "Gastroparesis Gourmet" cookbook published by G-PACT, people wrote their congresspeople, changed profile pics on Facebook, posted status updates and information to spread the word. Our Facebook fan page grew by well over 100 people in just a week! It was an incredible week and went much better than any of us could have ever imaged. People are so desperate and passionate and really want to do whatever they can to fight. A lot of people participated, and the impact was great as a number of people told me that they had friends who had never heard of DTP, and now they have joined our page to learn more about it. Donations and awareness band purchases have increased and people are continuing the efforts we started last week. One person wrote to tell me her congressperson even responded to her letter about the desire to help people with gastroparesis. We have hope!
Anyway, tomorrow I am going in for major surgery. It's pretty risky since I am immuno-suppressed and have SSSOOO many other health complications that factor in to the challenges and surgery recovery. I'm really stressed out and nervous about it, but I know it's time and the right thing to do. I have had an NJ tube for several months. This is a tube that was inserted into my nose in June and goes into my jejunum for tube feedings. I have been trying for over a year to balance my GP and dumping syndrome and have been unsuccessful. I was in really bad shape and barely surviving when finally my doctors at Hershey Med took notice and admitted me to the hospital and started me on NJ feedings. I feel better on the NJ feedings because they pass the pyloric sphincter in my stomach so I no longer experiencing severe dumping symptoms as long as I don't eat. Passing up the stomach completely also controls most GP symptoms. I do have some small bowel issues with some of my CIP coming back, but they are manageable at this point.
I hope to be able to consult with the metabolic doctors from Childrens Hospital who also deal with mitochondrial diseases while I am here to see if we can get to the root cause. There are a few things I can do to slow down the progression if we can figure it out. Kareem knows there is something very odd going on. The outward signs are being more and more apparent all the time. I'm struggling with mobility, short-term paralysis (sometimes full body paralysis for a few minutes, other times partial paralysis of hands and feet), more difficulty swallowing, which indicates some paralysis of my esophagus and difficulty urinating which I had before the transplant as well. My hands are different colors, they tingle and and I can't tell the difference between hot and cold sometimes, my feet turn blue, and other weird things. Because my mobility has gotten worse, I fall pretty frequently now and may end up back on my walker before long. Fortunately, no injuries yet...but it's getting risky as my osteoporosis has also worsened. He's supportive of my pursuit of mitochondrial disease because he is searching for why several of his CIP patients re-develop it after transplant. It would connect my factor V leiden (blood clotting problem), long QT (heart condition), weird response to low blood pressure (jerking like seizures), potassium dropping in spite of lots of IV potassium and supplements, and all kinds of things docs have never been able to explain or connect.
Before Kareem places the j-tube tomorrow, he has to make sure it can actually be done. He will be doing exploratory surgery first to check out my entire GI tract and look for anything that might be causing my problems. Suspecting some of them are related to adhesions (scar tissue from so many surgeries) he will do a lot of cleanup work and clear those out. If everything looks ok at that point, he will put in the tube. In addition to all of this, he may decide to do a full thickness muscle biopsy to see if I am in chronic rejection. If this is the case, he will have to remove a portion of my small bowel and it would require resection. Hopefully, he will be able to tell just by looking and not have to take that step. I am hopeful that by clearing up adhesions, it will improve some of my symptoms so perhaps I can eat a bit better without things getting stuck or getting obstructed at times. I don't want to be on this tube forever. I just hope I don't wake up to find out it couldn't even be placed! But, I am dealing with the best surgeon in the entire world...and I'm not biased, because multi-visceral transplants are considered to be the most difficult surgeries being performed today and he is the pioneer and does the majority in the world. He has saved so many lives in situations where any other doctor would have given up or not known what to do. I'm in excellent hands.
Please pray as I go through this, not only for me, but for my mom and for strength as she helps me get around for a while and helps me out. Pray for Kareem as he does it. He has back problems that make doing surgeries difficult for him. But, he doesn't want anyone else to touch me, even Dr. Costa who did the last very major surgery on me a couple of years ago. That's an indication of how big of a deal this could be, but I'm so glad he's doing it. Pray for strength for me. I'm pretty weak so recovery may be difficult. Plus, I'm frustrated because I feel like I'm going backwards healthwise. This isn't the kind of surgery you want because it doesn't improve much down the road. I'll feel better nutritionally and won't have my tube clogged up all the time, but it doesn't fix anything. I still won't be able to eat, unless the adhesion cleanup helps. But it won't take care of the dumping. Matbe he'll find something else while in there that he can actually fix.
I don't know what to expect. It's impossible to know how long recovery will be. It depends what he finds when he gets in there. I may or may not be in the TICU (transplant ICU) for a few days, depending how extensive it is and how I do. I hate the TICU! It's the most miserable experience, so I hope to go straight to 12 North. That's about all I know right now. I'll be in surgery before most of you wake up (or before you even read this) as long as a transplant doesn't come in for another patient overnight. My parents will keep this blog updated until I am back on and able to post myself.
Reminder to not send me live flowers or plants. I don't expect anything, but I don't want anybody to put out money for something I am not allowed to have as a transplant patient. They are dangerous for me and will get snagged at the nurses station.
Facebook friends- please remember that I don't want to receive notifications, gifts, hugs, or anything from games or applications while I am gone. It's just too stressful to try to catch up or go through and delete everything after being gone for a while. I appreciate messages to my wall and responses to status updates though. That's ok. I hope DTPers will continue to connect to each other through my wall.
People who follow G-PACT, please contact beenerc@g-pact.org with questions and she will direct you to the appropriate team member to assist you with your questions and concerns.
Thanks for your support, and I will post again as soon as I am able.
My blood counts were really low today so they sent me to 7W for a unit and have put four more on reserve for tomorrow. I knew I was tired and weak, but figured it was all related to the craziness I brought on myself the past few weeks with DTP Awareness Week for G-PACT. They also did an EKG because of my history of torsades (cardiac arrest).
DTP Awareness Week was a great success, especially considering it's the first time we did it! We celebrated our nine year anniversary on August 23! Nine tough years of fighting, discouraging a lot of times, but encouraging a lot of times too...especially recently as we have been making a bit more progress and have had some pretty major accomplishments. We are only getting positive feedback from awareness week. We pulled off five successful webinars, a lot of awareness activities, a balloon release awareness event which was really cool as patients nationwide released balloons into the air with notes attached about DTP and where to go for more info. It's our hope that these will be found by people and they will get in touch with us saying they learned more. If nothing else, it shows that even though we are scattered throughout the nation, we can all stand in solidarity in fighting this through awareness.
We also held a raffle for a messenger bag and a tote bag, two different contests for people to win a "Gastroparesis Gourmet" cookbook published by G-PACT, people wrote their congresspeople, changed profile pics on Facebook, posted status updates and information to spread the word. Our Facebook fan page grew by well over 100 people in just a week! It was an incredible week and went much better than any of us could have ever imaged. People are so desperate and passionate and really want to do whatever they can to fight. A lot of people participated, and the impact was great as a number of people told me that they had friends who had never heard of DTP, and now they have joined our page to learn more about it. Donations and awareness band purchases have increased and people are continuing the efforts we started last week. One person wrote to tell me her congressperson even responded to her letter about the desire to help people with gastroparesis. We have hope!
Anyway, tomorrow I am going in for major surgery. It's pretty risky since I am immuno-suppressed and have SSSOOO many other health complications that factor in to the challenges and surgery recovery. I'm really stressed out and nervous about it, but I know it's time and the right thing to do. I have had an NJ tube for several months. This is a tube that was inserted into my nose in June and goes into my jejunum for tube feedings. I have been trying for over a year to balance my GP and dumping syndrome and have been unsuccessful. I was in really bad shape and barely surviving when finally my doctors at Hershey Med took notice and admitted me to the hospital and started me on NJ feedings. I feel better on the NJ feedings because they pass the pyloric sphincter in my stomach so I no longer experiencing severe dumping symptoms as long as I don't eat. Passing up the stomach completely also controls most GP symptoms. I do have some small bowel issues with some of my CIP coming back, but they are manageable at this point.
I hope to be able to consult with the metabolic doctors from Childrens Hospital who also deal with mitochondrial diseases while I am here to see if we can get to the root cause. There are a few things I can do to slow down the progression if we can figure it out. Kareem knows there is something very odd going on. The outward signs are being more and more apparent all the time. I'm struggling with mobility, short-term paralysis (sometimes full body paralysis for a few minutes, other times partial paralysis of hands and feet), more difficulty swallowing, which indicates some paralysis of my esophagus and difficulty urinating which I had before the transplant as well. My hands are different colors, they tingle and and I can't tell the difference between hot and cold sometimes, my feet turn blue, and other weird things. Because my mobility has gotten worse, I fall pretty frequently now and may end up back on my walker before long. Fortunately, no injuries yet...but it's getting risky as my osteoporosis has also worsened. He's supportive of my pursuit of mitochondrial disease because he is searching for why several of his CIP patients re-develop it after transplant. It would connect my factor V leiden (blood clotting problem), long QT (heart condition), weird response to low blood pressure (jerking like seizures), potassium dropping in spite of lots of IV potassium and supplements, and all kinds of things docs have never been able to explain or connect.
Before Kareem places the j-tube tomorrow, he has to make sure it can actually be done. He will be doing exploratory surgery first to check out my entire GI tract and look for anything that might be causing my problems. Suspecting some of them are related to adhesions (scar tissue from so many surgeries) he will do a lot of cleanup work and clear those out. If everything looks ok at that point, he will put in the tube. In addition to all of this, he may decide to do a full thickness muscle biopsy to see if I am in chronic rejection. If this is the case, he will have to remove a portion of my small bowel and it would require resection. Hopefully, he will be able to tell just by looking and not have to take that step. I am hopeful that by clearing up adhesions, it will improve some of my symptoms so perhaps I can eat a bit better without things getting stuck or getting obstructed at times. I don't want to be on this tube forever. I just hope I don't wake up to find out it couldn't even be placed! But, I am dealing with the best surgeon in the entire world...and I'm not biased, because multi-visceral transplants are considered to be the most difficult surgeries being performed today and he is the pioneer and does the majority in the world. He has saved so many lives in situations where any other doctor would have given up or not known what to do. I'm in excellent hands.
Please pray as I go through this, not only for me, but for my mom and for strength as she helps me get around for a while and helps me out. Pray for Kareem as he does it. He has back problems that make doing surgeries difficult for him. But, he doesn't want anyone else to touch me, even Dr. Costa who did the last very major surgery on me a couple of years ago. That's an indication of how big of a deal this could be, but I'm so glad he's doing it. Pray for strength for me. I'm pretty weak so recovery may be difficult. Plus, I'm frustrated because I feel like I'm going backwards healthwise. This isn't the kind of surgery you want because it doesn't improve much down the road. I'll feel better nutritionally and won't have my tube clogged up all the time, but it doesn't fix anything. I still won't be able to eat, unless the adhesion cleanup helps. But it won't take care of the dumping. Matbe he'll find something else while in there that he can actually fix.
I don't know what to expect. It's impossible to know how long recovery will be. It depends what he finds when he gets in there. I may or may not be in the TICU (transplant ICU) for a few days, depending how extensive it is and how I do. I hate the TICU! It's the most miserable experience, so I hope to go straight to 12 North. That's about all I know right now. I'll be in surgery before most of you wake up (or before you even read this) as long as a transplant doesn't come in for another patient overnight. My parents will keep this blog updated until I am back on and able to post myself.
Reminder to not send me live flowers or plants. I don't expect anything, but I don't want anybody to put out money for something I am not allowed to have as a transplant patient. They are dangerous for me and will get snagged at the nurses station.
Facebook friends- please remember that I don't want to receive notifications, gifts, hugs, or anything from games or applications while I am gone. It's just too stressful to try to catch up or go through and delete everything after being gone for a while. I appreciate messages to my wall and responses to status updates though. That's ok. I hope DTPers will continue to connect to each other through my wall.
People who follow G-PACT, please contact beenerc@g-pact.org with questions and she will direct you to the appropriate team member to assist you with your questions and concerns.
Thanks for your support, and I will post again as soon as I am able.
Monday, July 19, 2010
The continued ramblings of the Scantephant
As most know, I was in the hospital AGAIN, last week. I was admitted to UPMC on Friday, July 9th after being at HMC on Wed and Thursday for a change of my NJ tube which had become clogged. I was at UPMC for a week basically for symptom control, testing, and nutrition.
I saw Dr. Kareem on Friday, July 16th for the first time since arriving. He gave me a number of options regarding my next steps. In the end, I decided to have him leave in my NJ tube for another week and try to see how it goes eating. If I can't keep up with it well, I still have the tube in for the rest of this week to use for feedings as needed so I don't get into a bind nutritionally. If that happens, we will probably pursue the next phase which is to have a j-tube placed surgically. The good news is, Dr. Kareem has agreed to do it which takes me out of the middle of it between my separate teams of physicians. At the same time, he will also do a full thickness muscle biopsy of my small bowel to try to determine whether or not I am in chronic rejection. Neither one of us thinks this is the case. We think it's more the dumping syndrome and gut dysmotility creating the havoc, but he said as long as he's in there, he might as well do that too along with exploratory surgery of the other organs. He didn't say, but I suspect he'd also do a lot of "clean up" of adhesions from my previous surgeries. He did this a couple years ago when I had my muscles closed. Apparently I was quite a mess at that time. I DO think that adhesions are contributing to some of my current problems so that could be helpful. Of course, any time you have a surgery, it only creates MORE adhesions.
My job this week is to work on eating as well as I can and see if my gut can tolerate it. If it does, great, we'll pull out the tube in clinic on Monday (the 26th). If not, we'll discuss the next option. He says the j-tube is a better option than the Peg/pej in my case because my particular motility issues will only create more problems with leakage and infection around the tube site if placed that way.
Last week in the hospital I started to have a lot of pain in my right hand. That hand has a tendency to be more purple than my left hand, something Dr. Kareem has noticed in some of his pseudo-obstruction patients. At first they thought it was tendonitis. It became so painful that I was requesting Tylenol in between my dilaudid to control it some. The pain started going up my arm and it started to swell near my elbow, so they had me watch for blood clots. In the end, my hand ended up swelling up so much and it became clear that I was holding in fluid because when pressed, my skin maintained it's indentation. They aren't sure why I was having so much pain from it unless it's because the tissues were inflamed from the fluid. Regardless, it has been improving and most of the swelling and pain is gone now. I also developed some fluid buildup in my abdomen which is still trying to dissipate.
For months, I have had difficulty urinating. There's hesitancy and I stop midstream (sorry people, it's life)! I've been to a urologist and had testing done which came back negative, as expected. This is a problem I developed in the final two years before my transplant as well and is not uncommon in CIP. The problem became even more apparent last week. I had been struggling all week with it, and finally lost it emotionally on Thursday after my biopsy. I was tired, coughing a lot because they had trouble getting the scope down my throat because of the NJ tube, and they had whisked in chest x-ray to make sure I wasn't developing aspiration pneumonia and to do an abdominal x-ray because GI thought they had dislodged my tube. I had to pee so much, but I couldn't and hadn't since Wednesday. My nurses decided to do a bladder scan which showed 700 cc's of fluid in there! That's a lot! They decided that, clearly, after all this time there was a problem and they would have to cath me in order to get it out. I was so upset over everything that this only made things worse. Thankfully my friend, Nancy, came by not long after all this started and was able to cheer me up with party hats and blowers.
I still had a lot of problems the rest of Thursday and went at least an 18 hour stretch without peeing. My doctors made it a requirement of discharge that I go before leaving the hospital on Friday, even though in between being cathed on Thursday and the trouble on Friday I had gone twice on my own. I'm still having a lot of trouble with that. When I had told my docs last week and they remembered that I had already seen a urologist, they just all looked at each other and made the comment about how it's the pseudo-obstruction. This new problem scares me somewhat because it may mean that the native condition that caused all my problems in the first place is creating havoc again, although, we've kind of started to come to that conclusion already. Initially, I was concerned about kidney damage because transplant meds often lead to kidney failure 5-10 years post-transplant, but fortunately my kidney numbers still look good!
On the positive front- thanks to a number of people banding together, and a LONG battle for every single vote for four weeks, last Monday G-PACT secured a $20K grant from Chase Community Giving! We have awesome ideas for these funds. We needed this money so much in order to move forward with a number of initiatives and it was just really cool how it all came down in the end! We were nervous in the final days as we had fallen from well within the safety range of receiving them all the way down to the bottom, but thanks to a few dedicated people we pulled through! A number of people hung around for hours online Monday night and IMed every single person who logged on to their friends list on FB and asked them to go vote for us to get the grant. Others had written every single person on their lists individually and asked them to vote. Many re-posted the link on their walls, at least once. In the end, it all paid off and every single vote turned out to be crucial as we barely pulled it out by 42 votes, finishing 189 out of the top 200! We needed to stay in the top 200 to receive the funds. We were all ecstatic once it was over with. While it was kind of fun on Monday night, late, watching as every vote came in like the night of election returns, we were all glad when it was over with and we actually had the final notification that we had in fact made it. A few people ended up in the hospital due to getting sick as a result of working so hard on it. Everyone who worked late that night was exhausted. Many stayed up late too excited to sleep. My room was right next to the nurses station and I was so caught up in what was going on I hadn't even noticed that all night long my door was open and my light was on. Finally, around 1 am one of them yelled into my room and asked what I was still doing up! I was kind of floored that I hadn't complained about my door or noticed it was open all night! I was too engaged in the task! It was worth it. The money will definitely be put to good use. We are going to have a board meeting soon to discuss the best way to use the funds and which awareness project to move forward with first. It's just really cool to see how people are coming together to help fight GP and CIP!
I got to meet Jodee Reid and her daughter, Matisse, and son, Fraanz, on Friday before going home. That was a lot of fun. Matisse has been waiting for almost four years for a small bowel transplant. They came here from New Zealand. I've been in touch with Jodee quite a bit for years, but this is the first time I got to meet Matisse in person. She's a joy and full of life! I had some party hats and blowers left over from my "party" on Thursday that Nancy had brought me that I gave to them and they certainly woke me (and the entire floor!) up! They were up there visiting Pauline too, a young lady from Australia who had a five organ over a year ago and was on my floor again. After they left my room, they went down to the garden with Pauline and her mom for a while. There was a nurse down there playing music, and apparently the kids and Pauline blew their horns as the nurse played and sang!
I saw Dr. Kareem on Friday, July 16th for the first time since arriving. He gave me a number of options regarding my next steps. In the end, I decided to have him leave in my NJ tube for another week and try to see how it goes eating. If I can't keep up with it well, I still have the tube in for the rest of this week to use for feedings as needed so I don't get into a bind nutritionally. If that happens, we will probably pursue the next phase which is to have a j-tube placed surgically. The good news is, Dr. Kareem has agreed to do it which takes me out of the middle of it between my separate teams of physicians. At the same time, he will also do a full thickness muscle biopsy of my small bowel to try to determine whether or not I am in chronic rejection. Neither one of us thinks this is the case. We think it's more the dumping syndrome and gut dysmotility creating the havoc, but he said as long as he's in there, he might as well do that too along with exploratory surgery of the other organs. He didn't say, but I suspect he'd also do a lot of "clean up" of adhesions from my previous surgeries. He did this a couple years ago when I had my muscles closed. Apparently I was quite a mess at that time. I DO think that adhesions are contributing to some of my current problems so that could be helpful. Of course, any time you have a surgery, it only creates MORE adhesions.
My job this week is to work on eating as well as I can and see if my gut can tolerate it. If it does, great, we'll pull out the tube in clinic on Monday (the 26th). If not, we'll discuss the next option. He says the j-tube is a better option than the Peg/pej in my case because my particular motility issues will only create more problems with leakage and infection around the tube site if placed that way.
Last week in the hospital I started to have a lot of pain in my right hand. That hand has a tendency to be more purple than my left hand, something Dr. Kareem has noticed in some of his pseudo-obstruction patients. At first they thought it was tendonitis. It became so painful that I was requesting Tylenol in between my dilaudid to control it some. The pain started going up my arm and it started to swell near my elbow, so they had me watch for blood clots. In the end, my hand ended up swelling up so much and it became clear that I was holding in fluid because when pressed, my skin maintained it's indentation. They aren't sure why I was having so much pain from it unless it's because the tissues were inflamed from the fluid. Regardless, it has been improving and most of the swelling and pain is gone now. I also developed some fluid buildup in my abdomen which is still trying to dissipate.
For months, I have had difficulty urinating. There's hesitancy and I stop midstream (sorry people, it's life)! I've been to a urologist and had testing done which came back negative, as expected. This is a problem I developed in the final two years before my transplant as well and is not uncommon in CIP. The problem became even more apparent last week. I had been struggling all week with it, and finally lost it emotionally on Thursday after my biopsy. I was tired, coughing a lot because they had trouble getting the scope down my throat because of the NJ tube, and they had whisked in chest x-ray to make sure I wasn't developing aspiration pneumonia and to do an abdominal x-ray because GI thought they had dislodged my tube. I had to pee so much, but I couldn't and hadn't since Wednesday. My nurses decided to do a bladder scan which showed 700 cc's of fluid in there! That's a lot! They decided that, clearly, after all this time there was a problem and they would have to cath me in order to get it out. I was so upset over everything that this only made things worse. Thankfully my friend, Nancy, came by not long after all this started and was able to cheer me up with party hats and blowers.
I still had a lot of problems the rest of Thursday and went at least an 18 hour stretch without peeing. My doctors made it a requirement of discharge that I go before leaving the hospital on Friday, even though in between being cathed on Thursday and the trouble on Friday I had gone twice on my own. I'm still having a lot of trouble with that. When I had told my docs last week and they remembered that I had already seen a urologist, they just all looked at each other and made the comment about how it's the pseudo-obstruction. This new problem scares me somewhat because it may mean that the native condition that caused all my problems in the first place is creating havoc again, although, we've kind of started to come to that conclusion already. Initially, I was concerned about kidney damage because transplant meds often lead to kidney failure 5-10 years post-transplant, but fortunately my kidney numbers still look good!
On the positive front- thanks to a number of people banding together, and a LONG battle for every single vote for four weeks, last Monday G-PACT secured a $20K grant from Chase Community Giving! We have awesome ideas for these funds. We needed this money so much in order to move forward with a number of initiatives and it was just really cool how it all came down in the end! We were nervous in the final days as we had fallen from well within the safety range of receiving them all the way down to the bottom, but thanks to a few dedicated people we pulled through! A number of people hung around for hours online Monday night and IMed every single person who logged on to their friends list on FB and asked them to go vote for us to get the grant. Others had written every single person on their lists individually and asked them to vote. Many re-posted the link on their walls, at least once. In the end, it all paid off and every single vote turned out to be crucial as we barely pulled it out by 42 votes, finishing 189 out of the top 200! We needed to stay in the top 200 to receive the funds. We were all ecstatic once it was over with. While it was kind of fun on Monday night, late, watching as every vote came in like the night of election returns, we were all glad when it was over with and we actually had the final notification that we had in fact made it. A few people ended up in the hospital due to getting sick as a result of working so hard on it. Everyone who worked late that night was exhausted. Many stayed up late too excited to sleep. My room was right next to the nurses station and I was so caught up in what was going on I hadn't even noticed that all night long my door was open and my light was on. Finally, around 1 am one of them yelled into my room and asked what I was still doing up! I was kind of floored that I hadn't complained about my door or noticed it was open all night! I was too engaged in the task! It was worth it. The money will definitely be put to good use. We are going to have a board meeting soon to discuss the best way to use the funds and which awareness project to move forward with first. It's just really cool to see how people are coming together to help fight GP and CIP!
I got to meet Jodee Reid and her daughter, Matisse, and son, Fraanz, on Friday before going home. That was a lot of fun. Matisse has been waiting for almost four years for a small bowel transplant. They came here from New Zealand. I've been in touch with Jodee quite a bit for years, but this is the first time I got to meet Matisse in person. She's a joy and full of life! I had some party hats and blowers left over from my "party" on Thursday that Nancy had brought me that I gave to them and they certainly woke me (and the entire floor!) up! They were up there visiting Pauline too, a young lady from Australia who had a five organ over a year ago and was on my floor again. After they left my room, they went down to the garden with Pauline and her mom for a while. There was a nurse down there playing music, and apparently the kids and Pauline blew their horns as the nurse played and sang!
Sunday, July 18, 2010
This is what it's about...a God learning moment
Yeah, I keep getting it more and more God...
This is what life is all about...I know it in my head, I know it in my heart, but I'm human and it has to be re-enforced from time to time...
So, this morning, I'm sitting in Connections Cafe at LCBC waiting for the doors to the auditorium to open. Every Sunday morning, I arrive early to check in for The Wheelhouse and kill the remaining minutes by meditating, taking my 9:00 meds, people watching, or going around and finding other people to talk to who may happen to be there early (and not running around getting things set up)! There's never a dull moment. There's always someone to talk to or something to see.
This morning was kind of unusual. I was sitting at a table and it was particularly slow and I was extra tired. I had just put away my empty container of meds, and just decided I'd stay there and see who would walk through the doors that I knew and wanted to talk to. I had missed last Sunday so it was really important for me to catch up on the social aspect of everyone's lives. After all, a lot can happen in two weeks!
Instead of catching up on what my friends had been up to, I had an experience I never expected to have when I got up this morning. As I was sitting in the cafe, a man had just finished getting a muffin and some coffee and he looked at me. I waved and said "hi," knowing I had never seen him before, yet he seemed to know me. He asked if he could sit with me, to which I responded "of course!" I moved my stuff to make sure he had room.
After the basic introductions, he said "My first Sunday here was the day you got baptized." I wasn't sure how to respond to that right away because I wasn't exactly sure where he was headed. But he went on and it became clear to me that he needed someone he knew was a believer to talk to. He started to tell me that he had been through a pretty tough time in recent years and had only recently started to come back to church. He stated that he had been church hopping "some," but all the churches he had tried were so traditional and he just wasn't comfortable in the environment. He lost his job two years ago, and had spent the past two years working in a job that was killing him -literally- as he had been working with dangerous chemicals. He knew he couldn't stay there for long and was seeking better employment. I nodded my head in acknowledgment that he had my attention, and I just continued to listen as he shared his story.
He started to talk about how he he was sitting with his son one night a few months ago, apparently drinking and watching sports, and said to himself "there's got to be more to it than this." He was frustrated with his employment and his life felt unfulfilled. He was seeking something, but he wasn't quite sure what. He had applied for five jobs and not yet heard from any of them. He was frustrated, and although he had his health, he knew he was not in a good situation with his job and not satisfied with the direction his life was headed.
He stopped briefly to ask me if I wanted anything from the cafe before the doors opened and then he continued with his story. He described how that night when he realized something was missing in his life, he decided to banter with God. He told God that He wasn't ready to move full-force into this faith thing, but He would meet God halfway. I'm not personally sure how I feel about "negotiating" with God, but I just listened...after all, this was HIS story. He told me that when he talked to God that night he said if God would show Him something, that somehow there's more to this, He would at least start going back to church.
Over the next few weeks or so he was turned down for four of the five jobs he had applied to. He wasn't expecting much, but his final application was in at the Army Depot in Mechanicsburg. Finally, Good Friday arrived. He made sure to emphasize the fact that it was Good Friday several times as he shared. He stated that around 10 that morning the phone rang. It was the Army Depot and they were asking him if he was available to come in for an interview. His eyes lit up as he stated, again, that "it just so happened to be Good Friday!" and that he was off work that day! He went on to describe how he had an interview at noon, and was called and offered the job by 3. Then, once again he said "and it just so happened to be Good Friday!" He said he knew then that there was something...he wasn't sure what, but that he knew it was not something that just happened. There was more behind it.
In spite of that, it took him a couple of weeks to "meet his end of the bargain," as he put it. I had told him earlier when we were introducing ourselves that I started attending LCBC Manheim in 2006 and had attended the Harrisburg campus since it was launched in Linglestown Middle school in 2007. He noted that he had never heard of LCBC until he saw the signs when we moved in last January, and that he only lived a couple of miles away. When he realized that what had happened to him when he prayed that night negotiating with God, and believed that the events that happened to him on Good Friday were not simply coincidental, he decided to check out LCBC. He admitted that he was a little disappointed when he walked in the doors that first Sunday and realized it was a baptismal service rather than a typical gathering with a sermon, but that in the end it was the perfect one to be at. The stories were inspirational and he loved to hear how the lives of others have been changed by Christ too. He concluded by stating that he only wished he could get his family there, but that his wife had begun to watch some TV ministries similar to LCBC and he was encouraged by that.
At that time, the atrium was beginning to empty out and people started to enter the auditorium. He said "well, I guess it's about time for things to get started." I said "yeah, it looks like it. Nice to meet you! Cool Story. I LOVE cool stories like that! See you around!" I proceeded to pack up my stuff and headed to the auditorium to find my friend, Jeff, as he gathered up his muffin and coffee trash to throw out. Again, God had another learning moment in store for me. As much as I enjoyed my chat time with him and was fascinated with his story and his willingness to be so open with me, I still had friends I needed to catch up with...I mean, again...it HAD been two, LONG weeks! :)
As I was catching up with Jeff on football, his love of snow, my love of the sun, his new job, his new hours, his plans for the day, and my Jeep, I saw someone walk to my right and sit down. It was the same man whom I had just spent at least 15 minutes chatting with taking a seat by himself two seats down. It hit me then that I should have stepped out of my comfort zone and invited him to sit with me rather than assume he had someone to sit with, or assume that he wouldn't want to sit with a 32 yo with a tube in her nose! And what was more important? Reaching out to someone who is still seeking and coming to church without family, or making sure I was up to speed on everyone else and making up for what I missed last week?
Over the next few minutes I knew what I needed to do to. As we sat there, listening to Pastor Mike ramble on about the importance of filling out the "Keeping in Touch" forms, I pulled out one of my business cards and handwrote my name and personal e-mail address on the back and handed it to him. I said "just in case you need to talk" and gave him two thumbs up. He said "thank you" and put it away. He thanked me again after the service for giving him my contact info as I said "it was nice to meet you...thanks for sharing your story."
I don't know if he'll write me at all, but I'm sure I'll run into him again. I'm glad that he felt comfortable coming to sit with me and sharing his story before the service, and that after I botched my first opportunity to invite him to sit with me, that he came and sat by me anyway.
I struggled for a long time over whether to get baptized again in March since I did it as a child, but after a lot of prayer I decided to do it because I felt like as a child I didn't fully understand the significance of it and my life has changed tremendously since...something I wanted to share with my new church family and public. I prayed that my story would somehow have an impact on the life of someone, but did not expect to actually hear or experience any outcome from it. Ironically, today was also baptism Sunday where more stories of lives changed by Christ were shared.
This is what it's about. This is what baptism is about. It can be hard to swallow your pride and admit that you need to take that step, especially when you have grown up in a Christian environment your whole life and everyone always assumed you were a Christian. It isn't the most comfortable thing to do to have your very personal, often painful, story shared with so many publicly. It's a little scary to look down into a pool of water and realize that your head is about to go down there and putting your trust in Pastor Mike not to drop you (or drown you as a Steelers fan!). But it's not about pride or discomfort. Jesus humbled himself and suffered great discomfort to reach out to others. He very publicly proclaimed His faith in the Father through baptism in a river in front of thousands of people. It doesn't stop there though. Baptism may be following in obedience what God proclaimed to be importance following the acceptance of Jesus as the Savior, but your life must also follow your proclamation.
I knew that some people who heard my story on March 23 would not have known the details behind my decision or why and how I came to Christ and decided to be baptized. I didn't expect it to lead to anything substantial. After all, I was one of 12 who was baptized that day. But apparently something hit this man in particular. Something big enough that he felt comfortable coming up to a complete stranger and talking about his struggles. That's what it's about.
I'm glad I chose to attend the first service this morning. I'm thankful for the clarity of mind God gave me and the fact that it was an unusually slow morning. It wasn't a coincidence that I was sitting there, tired and quiet, when he came up. Usually by then I would have jetted off somewhere and found someone to laugh it up with, playfully punch, or at least talk to about the events of the past or upcoming weeks. I hope that our interaction this morning was a start of something in his life that will lead to much greater things. After all, that's what it's all about. It's crucial to interact with other believers, study the Bible and worship every week together. It's important to serve in any capacity to ensure the ministry continues. But it's important to stop once and a while and think about those around you who may be there seeking something more, something new or different, and to be one who has shown an example that your life has been changed by Christ and is willing to share it.
This is what life is all about...I know it in my head, I know it in my heart, but I'm human and it has to be re-enforced from time to time...
So, this morning, I'm sitting in Connections Cafe at LCBC waiting for the doors to the auditorium to open. Every Sunday morning, I arrive early to check in for The Wheelhouse and kill the remaining minutes by meditating, taking my 9:00 meds, people watching, or going around and finding other people to talk to who may happen to be there early (and not running around getting things set up)! There's never a dull moment. There's always someone to talk to or something to see.
This morning was kind of unusual. I was sitting at a table and it was particularly slow and I was extra tired. I had just put away my empty container of meds, and just decided I'd stay there and see who would walk through the doors that I knew and wanted to talk to. I had missed last Sunday so it was really important for me to catch up on the social aspect of everyone's lives. After all, a lot can happen in two weeks!
Instead of catching up on what my friends had been up to, I had an experience I never expected to have when I got up this morning. As I was sitting in the cafe, a man had just finished getting a muffin and some coffee and he looked at me. I waved and said "hi," knowing I had never seen him before, yet he seemed to know me. He asked if he could sit with me, to which I responded "of course!" I moved my stuff to make sure he had room.
After the basic introductions, he said "My first Sunday here was the day you got baptized." I wasn't sure how to respond to that right away because I wasn't exactly sure where he was headed. But he went on and it became clear to me that he needed someone he knew was a believer to talk to. He started to tell me that he had been through a pretty tough time in recent years and had only recently started to come back to church. He stated that he had been church hopping "some," but all the churches he had tried were so traditional and he just wasn't comfortable in the environment. He lost his job two years ago, and had spent the past two years working in a job that was killing him -literally- as he had been working with dangerous chemicals. He knew he couldn't stay there for long and was seeking better employment. I nodded my head in acknowledgment that he had my attention, and I just continued to listen as he shared his story.
He started to talk about how he he was sitting with his son one night a few months ago, apparently drinking and watching sports, and said to himself "there's got to be more to it than this." He was frustrated with his employment and his life felt unfulfilled. He was seeking something, but he wasn't quite sure what. He had applied for five jobs and not yet heard from any of them. He was frustrated, and although he had his health, he knew he was not in a good situation with his job and not satisfied with the direction his life was headed.
He stopped briefly to ask me if I wanted anything from the cafe before the doors opened and then he continued with his story. He described how that night when he realized something was missing in his life, he decided to banter with God. He told God that He wasn't ready to move full-force into this faith thing, but He would meet God halfway. I'm not personally sure how I feel about "negotiating" with God, but I just listened...after all, this was HIS story. He told me that when he talked to God that night he said if God would show Him something, that somehow there's more to this, He would at least start going back to church.
Over the next few weeks or so he was turned down for four of the five jobs he had applied to. He wasn't expecting much, but his final application was in at the Army Depot in Mechanicsburg. Finally, Good Friday arrived. He made sure to emphasize the fact that it was Good Friday several times as he shared. He stated that around 10 that morning the phone rang. It was the Army Depot and they were asking him if he was available to come in for an interview. His eyes lit up as he stated, again, that "it just so happened to be Good Friday!" and that he was off work that day! He went on to describe how he had an interview at noon, and was called and offered the job by 3. Then, once again he said "and it just so happened to be Good Friday!" He said he knew then that there was something...he wasn't sure what, but that he knew it was not something that just happened. There was more behind it.
In spite of that, it took him a couple of weeks to "meet his end of the bargain," as he put it. I had told him earlier when we were introducing ourselves that I started attending LCBC Manheim in 2006 and had attended the Harrisburg campus since it was launched in Linglestown Middle school in 2007. He noted that he had never heard of LCBC until he saw the signs when we moved in last January, and that he only lived a couple of miles away. When he realized that what had happened to him when he prayed that night negotiating with God, and believed that the events that happened to him on Good Friday were not simply coincidental, he decided to check out LCBC. He admitted that he was a little disappointed when he walked in the doors that first Sunday and realized it was a baptismal service rather than a typical gathering with a sermon, but that in the end it was the perfect one to be at. The stories were inspirational and he loved to hear how the lives of others have been changed by Christ too. He concluded by stating that he only wished he could get his family there, but that his wife had begun to watch some TV ministries similar to LCBC and he was encouraged by that.
At that time, the atrium was beginning to empty out and people started to enter the auditorium. He said "well, I guess it's about time for things to get started." I said "yeah, it looks like it. Nice to meet you! Cool Story. I LOVE cool stories like that! See you around!" I proceeded to pack up my stuff and headed to the auditorium to find my friend, Jeff, as he gathered up his muffin and coffee trash to throw out. Again, God had another learning moment in store for me. As much as I enjoyed my chat time with him and was fascinated with his story and his willingness to be so open with me, I still had friends I needed to catch up with...I mean, again...it HAD been two, LONG weeks! :)
As I was catching up with Jeff on football, his love of snow, my love of the sun, his new job, his new hours, his plans for the day, and my Jeep, I saw someone walk to my right and sit down. It was the same man whom I had just spent at least 15 minutes chatting with taking a seat by himself two seats down. It hit me then that I should have stepped out of my comfort zone and invited him to sit with me rather than assume he had someone to sit with, or assume that he wouldn't want to sit with a 32 yo with a tube in her nose! And what was more important? Reaching out to someone who is still seeking and coming to church without family, or making sure I was up to speed on everyone else and making up for what I missed last week?
Over the next few minutes I knew what I needed to do to. As we sat there, listening to Pastor Mike ramble on about the importance of filling out the "Keeping in Touch" forms, I pulled out one of my business cards and handwrote my name and personal e-mail address on the back and handed it to him. I said "just in case you need to talk" and gave him two thumbs up. He said "thank you" and put it away. He thanked me again after the service for giving him my contact info as I said "it was nice to meet you...thanks for sharing your story."
I don't know if he'll write me at all, but I'm sure I'll run into him again. I'm glad that he felt comfortable coming to sit with me and sharing his story before the service, and that after I botched my first opportunity to invite him to sit with me, that he came and sat by me anyway.
I struggled for a long time over whether to get baptized again in March since I did it as a child, but after a lot of prayer I decided to do it because I felt like as a child I didn't fully understand the significance of it and my life has changed tremendously since...something I wanted to share with my new church family and public. I prayed that my story would somehow have an impact on the life of someone, but did not expect to actually hear or experience any outcome from it. Ironically, today was also baptism Sunday where more stories of lives changed by Christ were shared.
This is what it's about. This is what baptism is about. It can be hard to swallow your pride and admit that you need to take that step, especially when you have grown up in a Christian environment your whole life and everyone always assumed you were a Christian. It isn't the most comfortable thing to do to have your very personal, often painful, story shared with so many publicly. It's a little scary to look down into a pool of water and realize that your head is about to go down there and putting your trust in Pastor Mike not to drop you (or drown you as a Steelers fan!). But it's not about pride or discomfort. Jesus humbled himself and suffered great discomfort to reach out to others. He very publicly proclaimed His faith in the Father through baptism in a river in front of thousands of people. It doesn't stop there though. Baptism may be following in obedience what God proclaimed to be importance following the acceptance of Jesus as the Savior, but your life must also follow your proclamation.
I knew that some people who heard my story on March 23 would not have known the details behind my decision or why and how I came to Christ and decided to be baptized. I didn't expect it to lead to anything substantial. After all, I was one of 12 who was baptized that day. But apparently something hit this man in particular. Something big enough that he felt comfortable coming up to a complete stranger and talking about his struggles. That's what it's about.
I'm glad I chose to attend the first service this morning. I'm thankful for the clarity of mind God gave me and the fact that it was an unusually slow morning. It wasn't a coincidence that I was sitting there, tired and quiet, when he came up. Usually by then I would have jetted off somewhere and found someone to laugh it up with, playfully punch, or at least talk to about the events of the past or upcoming weeks. I hope that our interaction this morning was a start of something in his life that will lead to much greater things. After all, that's what it's all about. It's crucial to interact with other believers, study the Bible and worship every week together. It's important to serve in any capacity to ensure the ministry continues. But it's important to stop once and a while and think about those around you who may be there seeking something more, something new or different, and to be one who has shown an example that your life has been changed by Christ and is willing to share it.
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