On Thursday afternoon I’m going to start in patient rehab at a skilled nursing facility, at
Spruce Manor Nursing & Rehabilitation
220 South 4th Avenue and Spruce Street
West Reading, PA 19611
Phone (610) 374-5175
http://www.extendicareus.com/sprucemanor/
I’m encouraged, but nervous too. Nervous mostly because it’s so far away from family and friends and I’m not sure exactly what to expect. However, I’m also encouraged because it seems like they will really be able to help me a lot and meet so many of the needs I have all at once rather than the hospital which only does short term fixes based on the problem you are having at the time. It’s been a long time coming. I’ve fallen a lot and surprised I haven’t broken anything yet. In January I hit the ground hard in Target, in June it was Giant, and in the Salvation Army once my whole body went stiff (paralysis), but fortunately I was holding on to the cart and it passed before I collapsed. Lately, I’ve had to go back to using scooters in stores in order to shop. I usually need my walker when I am out, but unfortunately don’t have access to it as it is in the attic and we can’t get up there! So, I’ve just been careful and holding on to things. I‘ve fallen at home quite a bit. I’ve also been close a lot, and stairs have become almost impossible. I rarely go upstairs anymore because it is just way too tough. I Have soooooo much body pain, stiffness, and temporary paralysis sometimes. Those may be medical conditions (the paralysis especially) that can’t be helped by rehab, but I imagine the pain and stiffness can be improved with better nutrition and some good rehab. If you don’t remember, Dr. Kareem told me over a year ago that I am now in a palliative state in my life which, in this instance, means learning how to live with my conditions as normally as possible because he knows I will never be cured or well enough to live a normal life. I’ve tried on my own by increasing life activities and stuff to be “normal” but the fact is, my medical conditions just keep bringing me down and over time I have gotten into a state where I have days I feel like I did pre-transplant and can’t even get out of bed and I do NOT want to go there. I want to nip this before I get that bad off again.
This facility I am going to may be far, but I think it is worth it. I am quite impressed with how careful they are being, from reading the info on their site, and in speaking with the admissions director there. This is what they can/will provide for me:
-Physical rehab- getting me walking better so I don’t fall or wobble so much, getting upper body strength improved, overall rehab…just feeling physically stronger all over. Right now I tire out so easily that I have trouble showering, getting dressed, and get up as little as possible because it takes so much energy. That’s a bad spiral because the less I do, the worse it makes that. However, I have still been getting out occasionally to do some things which has been good, but I’ve also had to cut back on a lot of things I love so much (like working in the wheelhouse, social activities, etc) because I just don’t have the strength.
-nutrition therapy/digestive care- tube feedings still, but also can have a dietitian involved to help me work on some sensible diet, if possible (I want to try to retrain my gut and see if I can get more down), and at least be involved in perhaps helping me work through some of the digestive issues. I want to see if possible we can work on speeding up my tube feeds so I can get them just overnight and balance it out with better eating.
-pain management- I have SSSOOO much pain and stiffness all the time in my body. They can, hopefully, help me figure out the right medication protocol and with the rehab on top of that, perhaps I won’t have such a tough winter with pain issues which often keep me in bed
-better independent living- I have trouble so much now with taking care of my own space…even the simplest tasks are so challenging and tiring for me that I tend to let things pile up and don’t do well getting my laundry done. I hate it. Their ultimate goal is to get people in shape so they can go home and be independent and care for themselves.
When I go in on Thursday, I will meet with someone who will talk to me about my individual goals and set a plan of care. I’ll discuss what I need and where I want to be to come back home and be able to function more normally and independently. I’m excited about the possibility of getting things under better control overall. If they can help me get stronger, get pain under control, and get me better nutrition, whether through tube feeds increased or a combo of eating and tube feeds, then hopefully I can maintain the strength I get back through rehab once I leave. I’ve done outpatient PT unsuccessfully before because the other issues weren’t addressed too. It usually helped short term, but in the end I just lost it all.
They are able to provide me with all of my meds (I sent them a list), my tube feeds, an uncommon one they said, and all other things I need. They are giving me a semi-private room, but blocking the other bed so I won’t have a roommate since they are worried about immune-suppression issues and all tx rooms at UPMC are private, in the ER I have to be in an isolated section, etc. So, that helps that I won’t be on someone else’s schedule too. They also work around your typical schedule, so if I feel better in the afternoon than mornings or evenings, they will work the care schedule around that. That’s good because I will do much better in rehab if they get me at my peak “well” time of day. Everything will be completely covered by Medicare and Medicaid they told me, so the financial aspect isn’t going to be a problem.
It looks like a nice place with a gazebo, fish pond, and a lot of activities…a rec room with air hockey (I love air hockey), pool table, and other games. Activities like cartoon art and some other things. The rooms look nice and not so hospital like. They encourage you to bring your own stuff to kind of personalize your room and make it feel homey…so Steelers gear packed! I am hoping to meet some other young adults and make some friends while I am there so it will make it easier to deal with.
I don’t know about internet access yet…I am calling in the morning to ask a few questions, but at least I have iPhone and can stay connected that way. I’ll also take some G-PACT work I need/want to do that I can do offline if I don’t have wifi access…I imagine these days most places do…but it may be something I’d have to pay for myself. I have to take my own TV, according to their website, unless that’s just for long term care patients and I’ll probably take my Wii to play Super Paper Mario and games like that I can, not like baseball, although maybe with rehab I will be able to play baseball on it eventually!
So, anyway, that’s the scoop. Please just pray for me that I will adjust easily, it will be successful, and things will go smoothly. Last week I was absolutely terrified about doing this because I have heard some scary things about Medicare/Medicaid SNF’s, but I feel so much better about the situation now. I don’t know why I ever question that God will provide for all my needs…He always has and I know He’s in control.
I’m totally going to miss my life and routine, my friends, family, and others, but hopefully this will help so I can be even more active once I am out. I don’t know how long I’ll be there, but I will stay until I’m ready to come home in good shape. Hopefully, I will be able to keep in touch pretty easily! Please call and text me (if u have my number), e-mail I can also get on my iPhone (preferably my hastonc@g-pact.org account because I have problems with bluelightning on my phone), or FB message me, but hopefully I will wifi access too. I’ll want the correspondence!!
Love and thanks to all for being supportive through this process. My doctor thinks worth a try and I can’t help but think it will help me out so much for the long-term.
Thursday, October 7, 2010
Saturday, October 2, 2010
Following Christ- my story of "knowing" but not really "knowing"
For those of you who have known me for life, this will be surprising. I'm not sure what happened in my life. I grew up believing in God and never doubted His existence, but I don't feel like I ever made the fully informed decision to follow Christ. I walked the walk and knew the talk. I was well behaved, but my heart was never in my faith and I never had the passion or love for God or others that I should have had. I had some traumatic experiences post-transplant, as mentioned in my story below, that brought me flat on my face. I had been struggling and came to the realization that I truly had never placed my life fully in His hands.
I don't know if I became a Christian at the age of four and just never developed a relationship with Jesus or if it was not until after my transplant after my traumatic summer. All I know is something happened to me in August 2006 that totally turned my life around and I haven't been the same since. I had times growing up where I felt like God was guiding me and in my life, but overall I kind of shut Him out and relied on myself. This has been a hard thing for me to share and be open about because it has been assumed my whole life that I was a Christian, even by myself. I didn't come to the realization that I might not be until I couldn't feel him with me during my time of greatest need. I wasn't able to connect with Him until I asked Him to come rescue me and forgive me for everything and committed everything to Him. Even though difficult to admit I may not have become a Christian until the age of 28 when always assumed otherwise, this has been an important step to me in sharing my story is so important to reach out to others. It was not a decision I made lightly on a whim. I had been thinking about it for years. I wanted to make sure that the decision to get baptized was mine, I understood the stand I was taking this time, and that no one had an influence on the decision- I needed to make it alone to know that I was following God's command to be baptized in obedience to Him. I am not ashamed of the gospel!
The fact is, it doesn't matter WHEN I became a follower of Christ. The important thing is I know NOW for certain and have no doubts. I've been confused about this for a long time...was I a believer who just fell backwards and got so far away from my Savior that I just never felt close to Him? Or did I never give Him my life in the first place? At the age of four, it's hard to tell if you've truly had a life change. But, my passion is strong and it drives me in everything I do. I am not the same person I was before. God is amazing and there is no doubt He exists and is very, very real and loves me and you so much!
The following story was read as I pinned my message to Jesus on the cross, walked across stage with my dad who has played a large role in my spiritual growth/salvation regardless when it was, and then stood in the nice warm pool. I shivered all the way to the bathroom to change clothes. I did NOT want to get out! Lucky Mike who got to stay in there for most of the service!
Ironically, two of my close friends also decided, independently, to get baptized on the same day. Then we found out we had even picked the same service! It was cool to share the day with others who have also had a spiritual influence on me and we are doing life together.
For those of you who may not know, Baptism is a public way of telling everyone that I am a follower of Christ and have fully dedicated my life to serving Him in whatever capacity He has for me.
The story as read during baptism:
I’m the Founder and President of the Gastroparesis Patient Association for Cures and Treatments. G-PACT is a non-profit increasing awareness of gastroparesis and chronic intestinal pseudo-obstruction. I have struggled with these conditions for 16 years. I also volunteer with the kidcrew in The Wheelhouse and do office work for LCBC. I’m involved in a singles Life Group, am a rabid Steelers fan, and edit books my dad develops on leading others to Christ.
When I was four I prayed to trust Jesus. I was baptized, but I didn’t understand the significance. I never felt much love for others and was selfish. I didn’t rely on God to get me through tough physical challenges. I never truly felt His presence in my life.
On March 13, 2006 I received the gift of life when I survived a five organ transplant at the University of Pittsburgh. I encountered problems after the transplant which left me in desperation. No one understood what I was dealing with and I felt completely alone. My dad realized I was struggling and he took me through the first discipleship book in the series I now edit. In August of 2006, I recognized the sacrifice Jesus had made for me. Then I made the informed decision to be a fully devoted follower of Christ.
When I trusted Jesus, there was instant peace. He calmed my fears. I felt like my prayers actually went somewhere. I knew then that, no matter what, I was going to be ok whether on earth or in heaven.
Now I am passionate about connecting others to Jesus through G-PACT, LCBC, life example, and sharing my story. I don’t fear death and recognize the importance of living every day to the fullest. My life has been spared for a purpose. God has been doing incredible things and he has a very important plan for me.
I want to be baptized today because I want to express my commitment of two new lives to Christ. Last week I celebrated the four year anniversary of my new physical life as a recipient of a new digestive tract! Without that new physical life, I would not be celebrating my new spiritual life as a fully-devoted follower of Christ today.
Baptized March 23, 2010 at LCBC Harrisburg on Chambers Hill Road
Pastor: Mike Albon
I don't know if I became a Christian at the age of four and just never developed a relationship with Jesus or if it was not until after my transplant after my traumatic summer. All I know is something happened to me in August 2006 that totally turned my life around and I haven't been the same since. I had times growing up where I felt like God was guiding me and in my life, but overall I kind of shut Him out and relied on myself. This has been a hard thing for me to share and be open about because it has been assumed my whole life that I was a Christian, even by myself. I didn't come to the realization that I might not be until I couldn't feel him with me during my time of greatest need. I wasn't able to connect with Him until I asked Him to come rescue me and forgive me for everything and committed everything to Him. Even though difficult to admit I may not have become a Christian until the age of 28 when always assumed otherwise, this has been an important step to me in sharing my story is so important to reach out to others. It was not a decision I made lightly on a whim. I had been thinking about it for years. I wanted to make sure that the decision to get baptized was mine, I understood the stand I was taking this time, and that no one had an influence on the decision- I needed to make it alone to know that I was following God's command to be baptized in obedience to Him. I am not ashamed of the gospel!
The fact is, it doesn't matter WHEN I became a follower of Christ. The important thing is I know NOW for certain and have no doubts. I've been confused about this for a long time...was I a believer who just fell backwards and got so far away from my Savior that I just never felt close to Him? Or did I never give Him my life in the first place? At the age of four, it's hard to tell if you've truly had a life change. But, my passion is strong and it drives me in everything I do. I am not the same person I was before. God is amazing and there is no doubt He exists and is very, very real and loves me and you so much!
The following story was read as I pinned my message to Jesus on the cross, walked across stage with my dad who has played a large role in my spiritual growth/salvation regardless when it was, and then stood in the nice warm pool. I shivered all the way to the bathroom to change clothes. I did NOT want to get out! Lucky Mike who got to stay in there for most of the service!
Ironically, two of my close friends also decided, independently, to get baptized on the same day. Then we found out we had even picked the same service! It was cool to share the day with others who have also had a spiritual influence on me and we are doing life together.
For those of you who may not know, Baptism is a public way of telling everyone that I am a follower of Christ and have fully dedicated my life to serving Him in whatever capacity He has for me.
The story as read during baptism:
I’m the Founder and President of the Gastroparesis Patient Association for Cures and Treatments. G-PACT is a non-profit increasing awareness of gastroparesis and chronic intestinal pseudo-obstruction. I have struggled with these conditions for 16 years. I also volunteer with the kidcrew in The Wheelhouse and do office work for LCBC. I’m involved in a singles Life Group, am a rabid Steelers fan, and edit books my dad develops on leading others to Christ.
When I was four I prayed to trust Jesus. I was baptized, but I didn’t understand the significance. I never felt much love for others and was selfish. I didn’t rely on God to get me through tough physical challenges. I never truly felt His presence in my life.
On March 13, 2006 I received the gift of life when I survived a five organ transplant at the University of Pittsburgh. I encountered problems after the transplant which left me in desperation. No one understood what I was dealing with and I felt completely alone. My dad realized I was struggling and he took me through the first discipleship book in the series I now edit. In August of 2006, I recognized the sacrifice Jesus had made for me. Then I made the informed decision to be a fully devoted follower of Christ.
When I trusted Jesus, there was instant peace. He calmed my fears. I felt like my prayers actually went somewhere. I knew then that, no matter what, I was going to be ok whether on earth or in heaven.
Now I am passionate about connecting others to Jesus through G-PACT, LCBC, life example, and sharing my story. I don’t fear death and recognize the importance of living every day to the fullest. My life has been spared for a purpose. God has been doing incredible things and he has a very important plan for me.
I want to be baptized today because I want to express my commitment of two new lives to Christ. Last week I celebrated the four year anniversary of my new physical life as a recipient of a new digestive tract! Without that new physical life, I would not be celebrating my new spiritual life as a fully-devoted follower of Christ today.
Baptized March 23, 2010 at LCBC Harrisburg on Chambers Hill Road
Pastor: Mike Albon
Decision made, process started...
The decision has been made. I will be going into a skilled nursing facility sometime in the next few days. As opposed to a rehab hospital, in which the therapy is really intense, they feel I will do best in a nursing facility for starters, especially so they can then deal more with the medical/nutritional issues at the same time. The rehab will be easier on me until I get stronger. I'm scared. I've heard some horror stories about SNF, but am trying to ease those fears through a variety of ways, one being that I am detailing all my care on paper for them so they know exactly how I do things at home. Small bowel transplant patients are complicated and it's vital that they stay on top of that part too. Fortunately, I am smart and able to advocate for myself when needed. I will ask to be transferred if I end up in a bad location that won't cooperate with my needs.
My parents left town today. I will be as careful as I can be until I am able to get into a safer environment with some assistance. I do have friends and family who can help if I get in a real bind.
I'm praying that my fears will be eased...this is kind of a scary thing for me to go to a skilled nursing facility. I have heard some horror stories. I hope I will be able to make some friends my age there to help me get through it. My friends in Pitt really help me cope when I am there.
Also, praying for safety with the medical side of my care...that they will pay attention to my needs and listen to what I tell them when it comes to my care. My goal is to get physically stronger in hopes that I will also get nutritionally more stable and be able to eat better. People know it's the right thing for me to do and are happy my docs are pursuing it...but it's a new phase for me and I'm just not sure what to expect.
My parents left town today. I will be as careful as I can be until I am able to get into a safer environment with some assistance. I do have friends and family who can help if I get in a real bind.
I'm praying that my fears will be eased...this is kind of a scary thing for me to go to a skilled nursing facility. I have heard some horror stories. I hope I will be able to make some friends my age there to help me get through it. My friends in Pitt really help me cope when I am there.
Also, praying for safety with the medical side of my care...that they will pay attention to my needs and listen to what I tell them when it comes to my care. My goal is to get physically stronger in hopes that I will also get nutritionally more stable and be able to eat better. People know it's the right thing for me to do and are happy my docs are pursuing it...but it's a new phase for me and I'm just not sure what to expect.
Inpatient Rehab thoughts
This is the latest-
I fell yesterday in my apartment and, fortunately, once again I didn’t break anything but am sore all over. I have near falls multiple times a day and I am struggling with weakness so much it’s hard for me to shower and even get dressed w/o falling. I am really starting to scare myself. It’s only a matter of time before I fall and do some serious damage. I had thought a week out I’d see improvement, and I know I’ve been through a lot, but I was already asking my dad to pull out my Blue Lightning jr. walker b4 the surgery and don’t see how if I was that weak before, how I can pull myself out of it now without assistance. Twenty days in the hospital takes a lot of out of you! I am still driving obviously, but that doesn’t require as much leg/body strength or balance, etc so driving doesn’t seem to be much of a problem. I take it slowly more because of being on some dopey meds still and my reaction rate is slower, but I have backed off on meds so my head is a bit clearer. I get scooter buggies when I have to shop (as I did pre and post tx) and just stay off my feet as much as I can doing other things and carry as little as possible around, but then that requires a lot of trips around the house and that’s hard to do as well. But, I can hardly get up and down stairs and once I am down on the floor, getting back up is a nightmare. Thankfully, I already had a hospital bed so at least I have assistance in that.
So, we are now considering the possibility of inpatient rehab since I am struggling to do the most basic things and my safety at home alone is questionable. I’m not going to UPMC for it. The only advantage there is they know how to deal more with the small bowel transplant patients where Hershey doesn’t, but they don’t have an exceptional rehab program and have even dropped some of my friends. Yes. Dropped them. The medical side of it is bad too…they don’t do well taking care of tx patients with meds and other issues that come up, so there’s really no advantage to going to Hershey or UPMC. Either way, I have to teach them.
This is up in the air right now still, but I would appreciate prayers as I talk to my docs about it and we make decisions…outpatient rehab is an option, but when you are to the level where I am and can hardly dress or shower myself, simple tasks in my apartment are challenging, and safety is in question even, inpatient may be best for starters. The problem is, rehab isn’t going to be very successful until my nutrition status improves too, but by doing inpatient we can work on both at the same time while I stay safer and have help I need because it’s going to take a while to get my nutrition on track. Still a bit wacky from obstruction.
Thanks for continuing to pray for me as I work through all this and try to figure out the best way to get back to my baseline at the very least.
I fell yesterday in my apartment and, fortunately, once again I didn’t break anything but am sore all over. I have near falls multiple times a day and I am struggling with weakness so much it’s hard for me to shower and even get dressed w/o falling. I am really starting to scare myself. It’s only a matter of time before I fall and do some serious damage. I had thought a week out I’d see improvement, and I know I’ve been through a lot, but I was already asking my dad to pull out my Blue Lightning jr. walker b4 the surgery and don’t see how if I was that weak before, how I can pull myself out of it now without assistance. Twenty days in the hospital takes a lot of out of you! I am still driving obviously, but that doesn’t require as much leg/body strength or balance, etc so driving doesn’t seem to be much of a problem. I take it slowly more because of being on some dopey meds still and my reaction rate is slower, but I have backed off on meds so my head is a bit clearer. I get scooter buggies when I have to shop (as I did pre and post tx) and just stay off my feet as much as I can doing other things and carry as little as possible around, but then that requires a lot of trips around the house and that’s hard to do as well. But, I can hardly get up and down stairs and once I am down on the floor, getting back up is a nightmare. Thankfully, I already had a hospital bed so at least I have assistance in that.
So, we are now considering the possibility of inpatient rehab since I am struggling to do the most basic things and my safety at home alone is questionable. I’m not going to UPMC for it. The only advantage there is they know how to deal more with the small bowel transplant patients where Hershey doesn’t, but they don’t have an exceptional rehab program and have even dropped some of my friends. Yes. Dropped them. The medical side of it is bad too…they don’t do well taking care of tx patients with meds and other issues that come up, so there’s really no advantage to going to Hershey or UPMC. Either way, I have to teach them.
This is up in the air right now still, but I would appreciate prayers as I talk to my docs about it and we make decisions…outpatient rehab is an option, but when you are to the level where I am and can hardly dress or shower myself, simple tasks in my apartment are challenging, and safety is in question even, inpatient may be best for starters. The problem is, rehab isn’t going to be very successful until my nutrition status improves too, but by doing inpatient we can work on both at the same time while I stay safer and have help I need because it’s going to take a while to get my nutrition on track. Still a bit wacky from obstruction.
Thanks for continuing to pray for me as I work through all this and try to figure out the best way to get back to my baseline at the very least.
Sept. 27
I’ve been struggling to keep people updated, outside of blurbs in FB, but I am able to write this summary up today. This gives you have a general idea what to pray for with me if you do, what’s been up and what is coming up in case u haven’t been able to follow things or are not on Facebook.
1. Surgery went well, tube in and working. I am having a really hard time getting my rate to a level which will allow me to maintain weight at this point. I need to get even higher than that to even start gaining anything. At this point I am still losing at times. Gaining weight on tube feeds is much more difficult than on TPN (IV junk), especially if the gut can only tolerate so much. Confirmed return of GP and CIP not surprising, but not encouraging. Biopsy of removed lymph node looked ok…a little inflammation and stuff, but nothing that would make them think I am in chronic rejection! =)
2. Recovered from bowel obstruction w/ no surgical intervention, but the effects of losing an extra couple of weeks without nutrition and the additional weeks in the hospital have made me extra physically weak too. I can hardly walk, stairs are almost impossible, curbs outside stores have almost brought me down a few times. I have to pull myself up stairs with the hand rails or crawl up, and I am loaded down with my tube feeding backpack and anything else I need to carry at the same time. It’s going to take a lot of either personal rehab at home using what I’ve learned over the years, or some outside rehab to get anywhere close to where I was before the surgery. I was bad off strength wise before surgery because I was almost to the point of using my walker again even before that. So, I have a long ways to go in that aspect, but better nutrition will also factor in once I can get that up. I’ve almost fallen many times already and was falling a lot before the surgery…in Target once, at Giant once, at home a lot. After my transplant when I came home I did fall and burst my head open, so it makes me nervous. I do have osteoporosis even worse now than then. I am also wobbly on my feet and lose my balance. This could be meds, weakness, neurological/neuromuscular issues, and/or a combo…but my fall risk is extremely high.
3. Potassium still running low w/ supplements. They’ve increased me to very high levels. Encouraged to start seeing my cardiologist at Hershey Medical Center again for more routine EKG’s again because of my history of cardiac arrest due to my long QT interval. Was not concerned as long as my potassium/nutrition was better, but with everything coming back, we have to be cautious again.
4. Mom said schedule appointment with the Mitochondrial Disease doctors to start pursuing that avenue as an explanation for all of my problems. If I do have a Mito, I may be on some meds that are actually contributing to my problems. So, I could do something to slow the progression down. This is a condition, if you didn’t know, which is genetic and ties all of my seemingly unrelated problems together. Apparently considered by Dr. Koch (greatest GI doc in the world) in the early 2000’s for me, but he never said anything b/c he didn’t think anything could be done AND it can be hard to diagnose. Told me he had considered it for me when I saw him at DDW in 2008 and brought it up on my own. Mito testing, however, is not often covered by insurance so I’d need to be able to get into a research study or something. UPMC has two top mito docs, rare docs to find…again, there is a reason my fam was moved to PA in 1995! I have always been the one to benefit the most from the move!
5. The arm that was beat up in the hospital is still very painful and unusable for labs for weeks, if not longer. I’m still in enough pain to take dilaudid at least twice a day which wears off quickly. If you know me much at all u know that I despise pain meds and I always have leftovers after surgeries because I just don’t take it! Other pain meds for the chronic pain is the same. More nausea meds still, so I’m kinda loopy between it all…in case u can’t tell!
6. I need to allow myself time to heal, but again, you all know me and I don’t like to do that. I just like to keep going and it’s a very healthy way to be…most of the time! But now my body is really dictating for me quite clearly what I can and can’t do...i.e. it literally won’t move sometimes or the pain or fatigue hits when I want to get up and do something stupid. I AM paying attention most of the time…I think…because I know I am slowing things down if I don’t. But I am frustrated! Driving some, but not much because of the meds and I’m trying to back off on those. It’s important for me to figure out the line between where I need to push in order to heal better. Sitting around at home all day, even doing things for G-PACT, isn’t good and won’t help me gain any physical strength. But doing TOO much that I create problems is a concern as well. So I am working on that line and trying to just take it day by day, even hour by hour.
LCBC’ers…I think Sunday’s sermon was meant for me. I do feel like things are out of control with my health and I can’t personally get them under control, but I keep trying. I need to just be still and let God on this one…and I do feel like I had been soooooo busy with G-PACT and other life activities that this is a time for me to get grounded again by being forced to slow down for a while, focus on my health a bit more, stop trying to save the entire world from their problems, and figure out a healthier way to move forward in the future and juggling the many things I want to do. The problem is I am passionate about everything and I want to do everything all the time. To top that off, I’m a perfectionist! Deadly…
1. Surgery went well, tube in and working. I am having a really hard time getting my rate to a level which will allow me to maintain weight at this point. I need to get even higher than that to even start gaining anything. At this point I am still losing at times. Gaining weight on tube feeds is much more difficult than on TPN (IV junk), especially if the gut can only tolerate so much. Confirmed return of GP and CIP not surprising, but not encouraging. Biopsy of removed lymph node looked ok…a little inflammation and stuff, but nothing that would make them think I am in chronic rejection! =)
2. Recovered from bowel obstruction w/ no surgical intervention, but the effects of losing an extra couple of weeks without nutrition and the additional weeks in the hospital have made me extra physically weak too. I can hardly walk, stairs are almost impossible, curbs outside stores have almost brought me down a few times. I have to pull myself up stairs with the hand rails or crawl up, and I am loaded down with my tube feeding backpack and anything else I need to carry at the same time. It’s going to take a lot of either personal rehab at home using what I’ve learned over the years, or some outside rehab to get anywhere close to where I was before the surgery. I was bad off strength wise before surgery because I was almost to the point of using my walker again even before that. So, I have a long ways to go in that aspect, but better nutrition will also factor in once I can get that up. I’ve almost fallen many times already and was falling a lot before the surgery…in Target once, at Giant once, at home a lot. After my transplant when I came home I did fall and burst my head open, so it makes me nervous. I do have osteoporosis even worse now than then. I am also wobbly on my feet and lose my balance. This could be meds, weakness, neurological/neuromuscular issues, and/or a combo…but my fall risk is extremely high.
3. Potassium still running low w/ supplements. They’ve increased me to very high levels. Encouraged to start seeing my cardiologist at Hershey Medical Center again for more routine EKG’s again because of my history of cardiac arrest due to my long QT interval. Was not concerned as long as my potassium/nutrition was better, but with everything coming back, we have to be cautious again.
4. Mom said schedule appointment with the Mitochondrial Disease doctors to start pursuing that avenue as an explanation for all of my problems. If I do have a Mito, I may be on some meds that are actually contributing to my problems. So, I could do something to slow the progression down. This is a condition, if you didn’t know, which is genetic and ties all of my seemingly unrelated problems together. Apparently considered by Dr. Koch (greatest GI doc in the world) in the early 2000’s for me, but he never said anything b/c he didn’t think anything could be done AND it can be hard to diagnose. Told me he had considered it for me when I saw him at DDW in 2008 and brought it up on my own. Mito testing, however, is not often covered by insurance so I’d need to be able to get into a research study or something. UPMC has two top mito docs, rare docs to find…again, there is a reason my fam was moved to PA in 1995! I have always been the one to benefit the most from the move!
5. The arm that was beat up in the hospital is still very painful and unusable for labs for weeks, if not longer. I’m still in enough pain to take dilaudid at least twice a day which wears off quickly. If you know me much at all u know that I despise pain meds and I always have leftovers after surgeries because I just don’t take it! Other pain meds for the chronic pain is the same. More nausea meds still, so I’m kinda loopy between it all…in case u can’t tell!
6. I need to allow myself time to heal, but again, you all know me and I don’t like to do that. I just like to keep going and it’s a very healthy way to be…most of the time! But now my body is really dictating for me quite clearly what I can and can’t do...i.e. it literally won’t move sometimes or the pain or fatigue hits when I want to get up and do something stupid. I AM paying attention most of the time…I think…because I know I am slowing things down if I don’t. But I am frustrated! Driving some, but not much because of the meds and I’m trying to back off on those. It’s important for me to figure out the line between where I need to push in order to heal better. Sitting around at home all day, even doing things for G-PACT, isn’t good and won’t help me gain any physical strength. But doing TOO much that I create problems is a concern as well. So I am working on that line and trying to just take it day by day, even hour by hour.
LCBC’ers…I think Sunday’s sermon was meant for me. I do feel like things are out of control with my health and I can’t personally get them under control, but I keep trying. I need to just be still and let God on this one…and I do feel like I had been soooooo busy with G-PACT and other life activities that this is a time for me to get grounded again by being forced to slow down for a while, focus on my health a bit more, stop trying to save the entire world from their problems, and figure out a healthier way to move forward in the future and juggling the many things I want to do. The problem is I am passionate about everything and I want to do everything all the time. To top that off, I’m a perfectionist! Deadly…
Thursday, September 2, 2010
It's Carissa this time. Thanks Celeste for your posts on Tuesday :)
Costa came in this morning and they pulled the NG tube out. That was a relief. I feel a lot better just from that hose removed. The NG is MUCH bigger than the NJ so it's even more annoying. He said I could have ice chips (I had asked last night if I could have SOMETHING because I was feeling sick from not eating and not getting tube feeds...weird how that is), told me to walk, blah blah.
Then Kareem came in later and he always changes everything around. He walked in and said "Why are you on so many antibiotics???!!! Are we trying to make you sick?" To which I responded..."I think so!" Then he saw my j-tube connected to a drainage bag and said "Why are you hooked up to that???" I'm like "Kareem, I don't know! I didn't do it!" He said "stop the antibiotics, stop the fluids, disconnect that j-tube from drainage, You're not two days post-transplant!" My response was, "that's fine with me!" He was upset that Costa had me on so much stuff. That's typical. Kareem is more aggressive, Costa is a lot more cautious, and Kareem is the boss so what he says is final!
I'm happy because these IV drugs make me feel horrible. The less I have to take, the better I feel and the less things I'm connected to, the more human I feel too! I'm still getting vancomycin 2x/day with IV benadryl and tylenol because I've been running a low grade fever all day and they want to knock any potential infections out before they really get started. They weren't able to find a spot for a central line in my neck, so they stuck it in my femoral. That's a scary spot because it's really unclean, not to mention a pain to access! The sooner they can pull it out the safer I will feel. Yeah, kind of running out of "real estate" as my nurse said when he saw that they had also stuck an IV line in my foot on Tuesday. They couldn't find a vein anywhere else. Never a fun experience. When they infiltrate, it feels like a sprained foot. Thankfully, this one was pulled out before I even woke up.
Today I got two runs of potassium, one of magnesium, one of calcium, and a unit of blood. They are starting me back on weekly Arinesp injections (helps body produce red blood cells) because my counts have been running low again. Hopefully that will help my energy levels.
Anywho...the fluids are still running at a fairly slow rate because I had some really bad nausea this afternoon after they pulled the NG and it wasn't suctioning the junk out of my gut anymore. My nurse said it's up to me if we keep the fluids going, but I haven't been drinking much at all. With no tube feeds, I think it's too early to stop them. They were going to start tube feeds tonight at a rate of 5cc's/hour, but they decided to wait until tomorrow morning to give my gut more time to wake up from the anesthesia. They said I could hook the j-tube back up to drain, but I didn't want to do that unless the nausea didn't ease up enough after a dose of phenergan. I feel better than this afternoon and tons better than yesterday. Hopefully tomorrow I'll start grazing again like I do and they can start the tube feeds up. They are going to use the same formula I have been using at home since they know I tolerate it ok. I am taking most meds orally now with the exception of phenergan (nausea), my cortef (steroids), and dilaudid (pain).
Overall, I'm doing well. I'm getting around on my own most of the time. I kind of freak my nurses out sometimes because I do things they think they should be helping me with. I just like to get things done and they are too slow getting here when I call!
Costa said biopsy results of my lymph node should be back early next week. Other than that, not much to report. Just trying to get things straightened out.
Oh, this is funny...Dr. Costa said they were really impressed with the placement of the NJ tube I came in with. He asked who did it, and I said Hershey Med. Then I realized that, yeah, Hershey got it down my nose, but they didn't get it in far enough because the next day I woke up coughing and with stuff in my throat and chest. So, instead of going back to the ER, I pushed it in the rest of the way myself...HA! I seriously should be a doctor...to impress these guys with any medical procedure says something! They ARE the best!
Costa came in this morning and they pulled the NG tube out. That was a relief. I feel a lot better just from that hose removed. The NG is MUCH bigger than the NJ so it's even more annoying. He said I could have ice chips (I had asked last night if I could have SOMETHING because I was feeling sick from not eating and not getting tube feeds...weird how that is), told me to walk, blah blah.
Then Kareem came in later and he always changes everything around. He walked in and said "Why are you on so many antibiotics???!!! Are we trying to make you sick?" To which I responded..."I think so!" Then he saw my j-tube connected to a drainage bag and said "Why are you hooked up to that???" I'm like "Kareem, I don't know! I didn't do it!" He said "stop the antibiotics, stop the fluids, disconnect that j-tube from drainage, You're not two days post-transplant!" My response was, "that's fine with me!" He was upset that Costa had me on so much stuff. That's typical. Kareem is more aggressive, Costa is a lot more cautious, and Kareem is the boss so what he says is final!
I'm happy because these IV drugs make me feel horrible. The less I have to take, the better I feel and the less things I'm connected to, the more human I feel too! I'm still getting vancomycin 2x/day with IV benadryl and tylenol because I've been running a low grade fever all day and they want to knock any potential infections out before they really get started. They weren't able to find a spot for a central line in my neck, so they stuck it in my femoral. That's a scary spot because it's really unclean, not to mention a pain to access! The sooner they can pull it out the safer I will feel. Yeah, kind of running out of "real estate" as my nurse said when he saw that they had also stuck an IV line in my foot on Tuesday. They couldn't find a vein anywhere else. Never a fun experience. When they infiltrate, it feels like a sprained foot. Thankfully, this one was pulled out before I even woke up.
Today I got two runs of potassium, one of magnesium, one of calcium, and a unit of blood. They are starting me back on weekly Arinesp injections (helps body produce red blood cells) because my counts have been running low again. Hopefully that will help my energy levels.
Anywho...the fluids are still running at a fairly slow rate because I had some really bad nausea this afternoon after they pulled the NG and it wasn't suctioning the junk out of my gut anymore. My nurse said it's up to me if we keep the fluids going, but I haven't been drinking much at all. With no tube feeds, I think it's too early to stop them. They were going to start tube feeds tonight at a rate of 5cc's/hour, but they decided to wait until tomorrow morning to give my gut more time to wake up from the anesthesia. They said I could hook the j-tube back up to drain, but I didn't want to do that unless the nausea didn't ease up enough after a dose of phenergan. I feel better than this afternoon and tons better than yesterday. Hopefully tomorrow I'll start grazing again like I do and they can start the tube feeds up. They are going to use the same formula I have been using at home since they know I tolerate it ok. I am taking most meds orally now with the exception of phenergan (nausea), my cortef (steroids), and dilaudid (pain).
Overall, I'm doing well. I'm getting around on my own most of the time. I kind of freak my nurses out sometimes because I do things they think they should be helping me with. I just like to get things done and they are too slow getting here when I call!
Costa said biopsy results of my lymph node should be back early next week. Other than that, not much to report. Just trying to get things straightened out.
Oh, this is funny...Dr. Costa said they were really impressed with the placement of the NJ tube I came in with. He asked who did it, and I said Hershey Med. Then I realized that, yeah, Hershey got it down my nose, but they didn't get it in far enough because the next day I woke up coughing and with stuff in my throat and chest. So, instead of going back to the ER, I pushed it in the rest of the way myself...HA! I seriously should be a doctor...to impress these guys with any medical procedure says something! They ARE the best!
Tuesday, August 31, 2010
The post-surgical news so far is good...
(Celeste, again...)
So far, everything I have heard regarding Carissa's post-surgical condition has been good. They were in the process of moving her to her room around dinner time this evening after having several post-surgical infusions (potassium and I'm not sure what else).
When I spoke with Mom around dinner time, she had only seen Carissa for a few minutes in a hallway. She said that her color looked good and overall she seemed about as well as could be expected at this point. While Kareem was able to place the j-tube, Carissa is not quite done being a "Scantephant". She still has an NJ (or NG, we're not sure which) tube. This is a new one that was placed while Carissa was sedated and Mom says it is a bit larger than what she's had for the last few months. We suspect that the purpose of this one is primarily drainage for the next few days, as has been typical following other surgeries she has ha in the past. Dr. Kareem said that he plans to begin feedings through the j-tube in a few days.
The great news is that Carissa is not having to go to the TICU! They are moving her to 11 North (we suspect 12 North is full) which is another floor dedicated to transplant patients. She will be so much happier there and it makes visiting much easier for Mom and Dad.
I suspect that Carissa will not be up for other visitors for a few days. So, if you are in the Pittsburgh area, please make sure you call and check before dropping by for a visit.
As there are details worth updating, we will make sure we post them here! Continue to pray for Carissa and for her protection from post-surgical complications, especially infection. Thank you so much!
So far, everything I have heard regarding Carissa's post-surgical condition has been good. They were in the process of moving her to her room around dinner time this evening after having several post-surgical infusions (potassium and I'm not sure what else).
When I spoke with Mom around dinner time, she had only seen Carissa for a few minutes in a hallway. She said that her color looked good and overall she seemed about as well as could be expected at this point. While Kareem was able to place the j-tube, Carissa is not quite done being a "Scantephant". She still has an NJ (or NG, we're not sure which) tube. This is a new one that was placed while Carissa was sedated and Mom says it is a bit larger than what she's had for the last few months. We suspect that the purpose of this one is primarily drainage for the next few days, as has been typical following other surgeries she has ha in the past. Dr. Kareem said that he plans to begin feedings through the j-tube in a few days.
The great news is that Carissa is not having to go to the TICU! They are moving her to 11 North (we suspect 12 North is full) which is another floor dedicated to transplant patients. She will be so much happier there and it makes visiting much easier for Mom and Dad.
I suspect that Carissa will not be up for other visitors for a few days. So, if you are in the Pittsburgh area, please make sure you call and check before dropping by for a visit.
As there are details worth updating, we will make sure we post them here! Continue to pray for Carissa and for her protection from post-surgical complications, especially infection. Thank you so much!
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