Just an update on me since I have my Pittsburgh plans made-
I’m going to UPMC on Sunday Feb. 20. Will have biopsy 7 AM Monday morning, the 21st, then tx clinic. That afternoon, about 2:00, I am scheduled to go to CHP (Children’s Hospital of Pittsburgh) to see genetics and begin the process of looking for mitochondrial disease. That’s an hour and a half appointment. Tuesday I see my bone doctor for my annual appointment (I have osteoporosis and get annual IV infusions of Reclast. I failed on things like Fosamax), and then on Wednesday I see my neurologist, Dr. Sasha, for my neuropathy pain. He’s the same guy I see for my migraines.
The genetic testing should give them an idea in where to begin the mito testing. I’ll see the mito doc eventually, but not sure if it will be during the next trip or sometime later after some of the genetic testing results come back.
My biggest issue lately is severe back pain. I had x-rays last week because I am at risk for compression fractures due to osteoporosis. Those were negative, but I have a massive muscle spasm in the left side of my back. This could be dystonia (part of mito too) or something else. It also affects my hands and feet because they spasm, my hands become claws I can’t open or close and have severe pain from that (literally scream when it happens), my fingers get stuck, and my toes and feet get cramps and get stuck too. It could even explain my history of TMJ syndrome growing up, and why I have no gag reflex at all and have difficulty swallowing. I’ve had the problem off and on for years, but it’s markedly worse the past four weeks and gets worse every winter. Dystonia is impacted by video game playing, even just minutes of it, stirring things, repetitive activities, driving, even walking with my cane and holding onto it causes spasms and pain, typing, holding things, and makes me prone to dropping things like my keys, pens, and things like that. Affects my fine motor skills. You know I can’t hold on to anything and am always dropping things! It contributes to my clutziness!
They increased one of my muscle relaxers, but I’m limited to how high I can go because an increase in those also slows down the gut, not to mention makes me so sleepy. Narcotics also slow down the gut and can lead to obstructions. So, I am playing a balancing act on how much back pain relief I want vs. how much I want to risk obstructions and deal with the nausea and pain from my gut not digesting. My back and gut go hand in hand…when one acts up, often the other does too. The muscles are tied together closely and when my gut doesn’t move (as it hasn’t been much) it puts pressure on my back and increases the pain. Because I also have some scoliosis in the lower portion of my spine from the osteo, the spasms seem to be putting pressure there and causing a pinch in my sciatic nerve and causing pain down my leg on the left side. Because of the scoliosis, sometimes my hip pops out of joint, I have a lot of pain, but twist and pop it back into place and I’m fine. I’ve had this for at least 10 years.
I’m not sure why my gut isn’t moving as I have increased some of my motility agents and I’m still getting clogged up. I also switched tube formulas to something thinner (also with fewer cals, unfortunately) and it’s still not moving through very well. I can go down lower in my formula, but have been adding water instead. Just takes longer to go infuse every night. I’ve been like this for a month too.
I’m also exhausted. Tired all the time, and we can’t seem to get that under control. I have an occasional, somewhat energy day, but most days are tough for me to have much energy. You know how I am, I push through it anyway and am still active, but I only wish I had more energy to do things more efficiently and do things that require more energy. It also impacts my ability to concentrate and my confusion levels. I keep falling asleep in the middle of doing things…typing on the computer, talking on the phone, even in the middle of taking meds...sometimes I’ll wake up a few hours later and they are laying out all around me because I fell asleep in the middle of trying to take them!
The results of my cardio appointment a few weeks ago- my QT interval was fine that day and she doesn’t want to test for POTS right now since I am going for mito testing, but did notice the murmur (I’ve had this for years too, nobody knows exactly why), and she noticed symptoms of POTS when I got up from the chair and on to the table (my BP went way down and my heart rate when way up suddenly). She just told me how she’d treat it, but the testing is pretty miserable and she didn’t want to put me through it unless I start passing out all the time. Also, suggested implanting a loop recorder which would stay in for a year and record any abnormal cardiac activity, but because of my low immuno-supression and history of infections with foreign devices, even before the transplant, it’s too risky to pursue unless I pass out a lot or my symptoms get a lot worse. So, I’m keeping an eye on things and see her again in six months.
I’m scheduled for someone from CILO to come for an in-home eval on March 2 to determine services I need for assistance at home with things like laundry, getting in the shower safely, getting my bed changed, local errands if I can’t get out some day, fixing food for me (I tend to warm up non-healthy stuff rather than eat eggs or something because I am too tired), and things like that. They are really backed up there so it's taking weeks to get in for the eval...then another several weeks before they can start working.
And yep, in spite of it, I am still planning to go to DDNC. I have NO idea how I’m going to make it this year, but this event is such a highlight of my year and SSSOOO important. I’m going by train again. In on Friday night for G-PACT events on Saturday, the DDNC conference Sunday, lobbying Monday, and I’m staying there to travel home until Tuesday because it did NOT work well to try to travel home the day of lobbying last year! I was just too tired and need a night to rest. I’m looking forward to the night to relax after that anyway like I did the first year.
I’m debating on taking a friend with me to help me get around, so if you know of someone who would like a free trip to DC March 4-8 to be my assistant, please pass the info along! We’ll cover all expenses…the train ride, the hotel (staying in nice hotel, the Hyatt Regency on New Jersey Ave). I need someone to help me get my luggage from the train station to hotel and push me in a wheelchair around the city when we sightsee on Sat and lobby on Monday.
G-PACT is going very well…there is so much going on I’d have to write another book to get into it, but we knocked the socks off of a company we spoke with today on everything we are doing so I am really excited. A great group has come together and are working really hard to get things done. Just keep following our fan page on FB if you are a member to keep track…and that only scratches the surface. Looking forward to a new site coming out in a couple of weeks which is really gonna take us far.
Basically, I am just praying for some relief from something. It would be a huge relief for me to finally have some ANSWERS to connect all of my problems so I am kind of “hoping” for a mito diagnosis. It’s not a good diagnosis really with not an excellent prognosis long term, but there are some things they COULD do to help me some and stop some things that may be harming me now. It could slow down the progression. The way I see it, I am developing more and more issues as it is whether I have a name for it or not. At this point I just want a name for it and a way to treat it so that I am as comfortable as I can possibly be as I continue into the future and doing the things that I do for as long as I possibly can. I know Dr. Kareem put me in the “palliative care” category over a year ago re: the gut and overall issues, and I want to make sure I cover all basis in that now…not just the gut, but that we can address everything possible.
Thanks for your continued prayers and support. Been kind of frustrated on the health end lately, and just glad I have good G-PACT stuff and other enjoyable things to balance that out and keep me going. Too much good stuff there for me to give up or stop. I’m just really excited about the progress of all that!!!
Friday, February 4, 2011
Wednesday, February 2, 2011
My Steelers: Goin' to the Superbowl to Win!
Goin' to the Superbowl to Win
(to the tune of "Chapel of Love)
By: Carissa Haston
Jets crashed here,
when in they flew,
(whoa whoa whoa),
where's our ring,
which we are due,
Sunday's the day,
our pride comes through,
and we'll always win more and more and more,
Because we're
Goin' to the Superbowl and
Gonna get number 7,
Goin' to the Superbowl and
Gonna get number 7,
Gee, I really love you Steelers,
Gonna get number 7,
Goin' to the Superbowl to win!
Cheese will string,
Black/gold will shine,
(whoa whoa whoa),
Drinks will fizz and
Cheese will whine,
We'll cheer until,
Cheese has no time,
and they have no chance to win it anymore! Because we're
Goin' to the Superbowl and
Gonna get number 7,
Goin' to the Superbowl and
Gonna get number 7,
Gee, I really love you Steelers,
Gonna get number 7,
Goin' to the Superbowl to win!
(to the tune of "Chapel of Love)
By: Carissa Haston
Jets crashed here,
when in they flew,
(whoa whoa whoa),
where's our ring,
which we are due,
Sunday's the day,
our pride comes through,
and we'll always win more and more and more,
Because we're
Goin' to the Superbowl and
Gonna get number 7,
Goin' to the Superbowl and
Gonna get number 7,
Gee, I really love you Steelers,
Gonna get number 7,
Goin' to the Superbowl to win!
Cheese will string,
Black/gold will shine,
(whoa whoa whoa),
Drinks will fizz and
Cheese will whine,
We'll cheer until,
Cheese has no time,
and they have no chance to win it anymore! Because we're
Goin' to the Superbowl and
Gonna get number 7,
Goin' to the Superbowl and
Gonna get number 7,
Gee, I really love you Steelers,
Gonna get number 7,
Goin' to the Superbowl to win!
Sunday, December 5, 2010
DTP Fight
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!
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!
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.
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