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.

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/ 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 one screaming over my TV, temp as I like it (cold most say!), all my techie stuff, dietitian very helpful in getting what I need now, nice window view. If it weren't for a fear of cleanliness still and distance from home, it's not much worse or different than being in a regular hospital. Most awkward thing is the fact that there are so many geriatrics w/ dementia and other things I'm not as used to being around...I'm used to tubes, IV's, catheters, etc, but it's a different type of population and kind of sadder. The PT/OT hasn't been as good as I had hoped, but they do feel like I have made some progress. I would be leaving AMA if I left right now and Medicare wouldn't cover this past week. So, I'm gonna stick it out. I want to anyway. I do want the help to get back on my feet and be more independent. They plan to show me some energy conservation techniques for times I am too tired to even get out of bed, or I get so weak and tired while doing things. I read the list they left though and I already do all of those things!

On Saturday night I had a little mishap when my j-tube fell out. This isn't uncommon, but Spruce Manor didn't have the size tube I needed so I got an "exciting" ride in an ambulance to the Reading Hospital ER for a tube change. Reading Hospital was actually impressive for what I saw them for. Knew what they were doing, unlike other ER's I have been to for tube changes.

I'll be here probably a couple more weeks at least. I'd like to be out for my b-day, or at least be allowed out for a b-day break. My mom is coming by Saturday to do my laundry so it doesn't get lost w/ other resident clothing, and to bring me more junk for this upcoming week. I really hope this pays off in the end. It's been a tough ordeal, but I'm a lot tougher and I can get through this too. It hasn't been all bad. I've heard some good historical stories from other people. It's just kind of hard to "work out" with people three times my age! Makes me feel...well...99 years old! I probably do for real feel 99 when it comes to pain and stiffness and general mobility. But I'm working on that. It's hard to know how much is nutritional, physical conditions that cause this, or anything I can really change much based on the cause. It's definitely a combo, just not sure what is contributing the most.

Thursday, October 7, 2010

A new journey begins...

On Thursday afternoon I’m going to start in patient rehab at a skilled nursing facility, at
Spruce Manor Nursing & Rehabilitation
220 South 4th Avenue and Spruce Street
West Reading, PA 19611
Phone (610) 374-5175

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 account because I have problems with bluelightning on my phone), or FB message me, but hopefully I will wifi access too. I’ll want the correspondence!!

Love and thanks to all for being supportive through this process. My doctor thinks worth a try and I can’t help but think it will help me out so much for the long-term.

Saturday, October 2, 2010

Following Christ- my story of "knowing" but not really "knowing"

For those of you who have known me for life, this will be surprising. I'm not sure what happened in my life. I grew up believing in God and never doubted His existence, but I don't feel like I ever made the fully informed decision to follow Christ. I walked the walk and knew the talk. I was well behaved, but my heart was never in my faith and I never had the passion or love for God or others that I should have had. I had some traumatic experiences post-transplant, as mentioned in my story below, that brought me flat on my face. I had been struggling and came to the realization that I truly had never placed my life fully in His hands.

I don't know if I became a Christian at the age of four and just never developed a relationship with Jesus or if it was not until after my transplant after my traumatic summer. All I know is something happened to me in August 2006 that totally turned my life around and I haven't been the same since. I had times growing up where I felt like God was guiding me and in my life, but overall I kind of shut Him out and relied on myself. This has been a hard thing for me to share and be open about because it has been assumed my whole life that I was a Christian, even by myself. I didn't come to the realization that I might not be until I couldn't feel him with me during my time of greatest need. I wasn't able to connect with Him until I asked Him to come rescue me and forgive me for everything and committed everything to Him. Even though difficult to admit I may not have become a Christian until the age of 28 when always assumed otherwise, this has been an important step to me in sharing my story is so important to reach out to others. It was not a decision I made lightly on a whim. I had been thinking about it for years. I wanted to make sure that the decision to get baptized was mine, I understood the stand I was taking this time, and that no one had an influence on the decision- I needed to make it alone to know that I was following God's command to be baptized in obedience to Him. I am not ashamed of the gospel!

The fact is, it doesn't matter WHEN I became a follower of Christ. The important thing is I know NOW for certain and have no doubts. I've been confused about this for a long time...was I a believer who just fell backwards and got so far away from my Savior that I just never felt close to Him? Or did I never give Him my life in the first place? At the age of four, it's hard to tell if you've truly had a life change. But, my passion is strong and it drives me in everything I do. I am not the same person I was before. God is amazing and there is no doubt He exists and is very, very real and loves me and you so much!

The following story was read as I pinned my message to Jesus on the cross, walked across stage with my dad who has played a large role in my spiritual growth/salvation regardless when it was, and then stood in the nice warm pool. I shivered all the way to the bathroom to change clothes. I did NOT want to get out! Lucky Mike who got to stay in there for most of the service!

Ironically, two of my close friends also decided, independently, to get baptized on the same day. Then we found out we had even picked the same service! It was cool to share the day with others who have also had a spiritual influence on me and we are doing life together.

For those of you who may not know, Baptism is a public way of telling everyone that I am a follower of Christ and have fully dedicated my life to serving Him in whatever capacity He has for me.

The story as read during baptism:

I’m the Founder and President of the Gastroparesis Patient Association for Cures and Treatments. G-PACT is a non-profit increasing awareness of gastroparesis and chronic intestinal pseudo-obstruction. I have struggled with these conditions for 16 years. I also volunteer with the kidcrew in The Wheelhouse and do office work for LCBC. I’m involved in a singles Life Group, am a rabid Steelers fan, and edit books my dad develops on leading others to Christ.

When I was four I prayed to trust Jesus. I was baptized, but I didn’t understand the significance. I never felt much love for others and was selfish. I didn’t rely on God to get me through tough physical challenges. I never truly felt His presence in my life.

On March 13, 2006 I received the gift of life when I survived a five organ transplant at the University of Pittsburgh. I encountered problems after the transplant which left me in desperation. No one understood what I was dealing with and I felt completely alone. My dad realized I was struggling and he took me through the first discipleship book in the series I now edit. In August of 2006, I recognized the sacrifice Jesus had made for me. Then I made the informed decision to be a fully devoted follower of Christ.

When I trusted Jesus, there was instant peace. He calmed my fears. I felt like my prayers actually went somewhere. I knew then that, no matter what, I was going to be ok whether on earth or in heaven.

Now I am passionate about connecting others to Jesus through G-PACT, LCBC, life example, and sharing my story. I don’t fear death and recognize the importance of living every day to the fullest. My life has been spared for a purpose. God has been doing incredible things and he has a very important plan for me.

I want to be baptized today because I want to express my commitment of two new lives to Christ. Last week I celebrated the four year anniversary of my new physical life as a recipient of a new digestive tract! Without that new physical life, I would not be celebrating my new spiritual life as a fully-devoted follower of Christ today.

Baptized March 23, 2010 at LCBC Harrisburg on Chambers Hill Road
Pastor: Mike Albon

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.

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.

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…