Ok, so I am starting day 28 in rehab. I didn’t expect to be here this long when I started. Technically, for rehab, it’s not that long, but I guess it just threw me off-guard how many areas I really needed to work on. It’s been quite an experience…good and bad, but not one I ever want to do again! The stories I have to tell…mostly nightmarish ones…but some good and interesting ones too. It’s been kinda cool to see how technology has changed lives. In the time I’ve been here, I’ve seen people who couldn’t walk start walking and people who couldn’t talk start talking. I’ve seen a double amputee get legs and start to become independent.
It’s also been a long and difficult challenge. I’m so much younger than anyone else here. I stay in my room, alone, 24/7 with the exception of therapy because of the risk of catching something. The people here don’t communicate a whole lot, and obviously the conversations aren’t on my level or of my interest! There are a few people I talk to, but in general, there is no one here I can truly talk to. Rick has become my closest connection to sanity and conversation. He’s only 50 and has been here almost two years. He’s quite a character! He wheels himself in here at least once a day to chat and keep me company. He hopes to leave in December, and said he’s glad I can go, but is sorry to see me leave him with all the old people…LOL.
It was a struggle more at first when no one knew me or my situation and I had to educate them on how to take care of me. Basic hygiene wasn’t being met such as washing their hands in between patients! I’ve grown to really like a lot of my nurses, but they’ve been changing them around this week so I don’t have the same ones anymore. This is creating problems as I am finding myself re-educating people again with slightly over a week left to go before I can go home.
The goal to get me out of here now is Friday, the 12th. PT thinks I should be ready by then. They are going to do a home assessment next week to see what accommodations or equipment I may need. I will be going home for that evaluation and return to the center afterwards. I know I will return home with a cane, at least for a little while. I may use my walker for a while when not at home if I am going to be out for more extended periods of time. It’s a cool blue one called “Blue Lightning, Jr.” and has a seat and shopping basket with it so if I get tired I can sit down. We’ve turned it around and used it as a wheelchair even sometimes, although it’s not very comfortable!
My current status is that I am anemic and have been for a couple of weeks. The doctor here isn’t being very cooperative though, in spite of receiving calls from my team in Pittsburgh that my anemia needs to be treated more aggressively. I’ve been tired a lot and it’s made my therapy more challenging, so I’m frustrated that they aren’t on top of it better. I called my coordinator again today and she was going to contact the doctor again. Also, my prograf (anti-rejection drug) levels were really low so they are trying to figure out whether to increase my dose or not.
Overall, I think I am getting better. I’m trying to eat a little bit to figure out if there’s anything at all I can handle ok. I’m sick a lot, but I’m forcing it. Thus far, in small portions of everything, bread, bites of pasta, SF/fat free ice cream, eggs, pancakes and waffles, and pretzels have been going down ok…basically carbs and high protein. They bring me an ice cream snack twice a day. I had told the dietitian I thought the SF ice cream here is really, really good, and now I think I am going to turn into it! They send it on every tray and in between too now! I have stored a bunch in my fridge! It’s way too much!
My tube feeding rate has been increased so that I am off five hours during the day now. They increased it more this morning so I can be off for 7 hours a day. My goal is to get it up even one step higher so I can be off most of the day. I’m not sure how this is going to go. Already, I am having problems with tube formula backing up into my stomach and spitting or vomiting it back up, or the formula is also coming out of my tube insertion site because my gut isn’t moving it through fast enough. My hole may also have gotten bigger, so I may need a larger tube placed. This isn’t a complicated ordeal. They can just pull out the old one and stick a new one right in the same spot. I’ve even done it myself!
I get about 1,000 calories a day through my tube, so it’s important that I eat what I can to supplement that. My body is starving for nutrition, so it’s kind of clinging to everything right now. My abdomen is really distended from not digesting well and I have a bit of a cortef/steroid chipmunk cheek face going on, but it’s not too bad. I’m not sure why I’m extra puffy, except the tube formula is adding more fluid and I may be retaining some of it. I have been having trouble peeing, again, and I’m not sure what is going on with that except for it just being part of the whole process of the DTP coming back. I know my gut is slow. I’ve been regurgitating a lot more. I’ve had a sore throat for three days from reflux, and last night I regurgitated and choked on a piece of pretzel I had eaten. It was stuck in my throat for a while and my pills are always getting stuck in my chest. I’ve noticed that my swallowing has also been getting worse. I don’t know what is going on with my body…but I hope to get some answers. I am going to try to get into a doctor for mitochondrial disease and see if that is potentially causing all of my problems. I’ve just been too sick to make any arrangements to go…and I’m not sure my insurance will cover any testing for that. It’s not something they can cure, but it would explain a lot that is going on with my body and if it is mito, I am taking some meds that could actually be contributing to those kinds of problems. So, if there’s anything at all I can do to slow this down or improve some things, I’m all for figuring it out…
I’ve been having a lot of pain in my body. Some days I have a lot of trouble moving and walking. I am stiff a lot. They decided to increase my Fentanyl Patch to 50. I feel stronger walking and am doing really well with the stairs as long as I have a cane. Last week they tried to get me on the floor and teach me how to get back up so when I fall, I can get myself back up, but it became clear that I’m not strong enough to do that yet. They had to pull me up by my gait belt because my upper legs and quads gave out on me! So, they’ve started to focus on strengthening exercises in that part of my body. I imagine that will be a focus next week as I prepare to go home.
The other day the social worker came in…but it wasn’t the same one I’ve had! Apparently the other one left suddenly! She had been working on getting me into a program at home that would provide an aid to help me clean, do laundry, get things together for me, drive me places, run errands, or do other things I need at home in order to help me have some independence. Because I am on Medicaid, I qualify for this and can get a waiver so it won’t cost me anything. I am looking for someone, who is not a close friend now, who might be interested in the position. I don’t know much about it as far as pay and stuff, but anyone can do it. They don’t recommend that I ask a friend because relationships often change in these situations, but I would prefer to have someone that a friend has recommended and shares similar values. I plan to speak with the SW again on Thursday or Friday to let her know they are planning to let me go home next Friday and see if we can get it set up before I go home. I think it will really help me feel more independent and help me get some things done. It can be depressing to have chores hanging over my head and no energy to do them, or errands that have to be run and not feel like doing them. I hope this will help me be able to function better in other areas of my life if I have some assistance with some other things. It should also reduce some of the pressures on my parents and I know it will relieve a lot of my stress and frustrations of not being able to keep up with everything at home.
My birthday was last week, and it was ok…definitely could have been better though! It helped that I received over 150 FB b-day wishes!!!! My parents sent me some balloons and so did my Life Group. On Sunday, my parents picked me up for church and then we went to the Tropical Smoothie afterwards to hang with my sisters, bil’s, and nieces and nephews. That was a nice break from the rehab center for a few hours. It was fun to get new STEELERS PJ pants and a shirt, especially since I had nothing to wear for the game in the evening! I also got a portable charger for my iPhone 4…it’s like a case for the phone and charges at the same time! It’s very cool and something I can really use as I sit in clinic for long days or travel to Pittsburgh and my battery tends to die too soon!
I guess right now my biggest concerns are that I make it through the next 8 days ok. I’m having a really tough time. Even though I've been counting up and finally have a goal now I can count down towards, often the last few days are the toughest...right now I am so weary that 8 days seems like so long to me. I know I've been hospitalized way longer than this before, but this is a different situation and I'm just having a really tough time coping. This is definitely a test of my strength and ability to get through anything...this is not easy. It's one of those experiences I hope to put completely behind me and I hope I am able to eventually forget most of it.
I’m really bored and really frustrated with a lot of the medical issues. I’ve been really nauseous a lot and I’m trying to figure out anything that could be contributing. I’m on so many meds, and although I have been for years, are some of those just affecting me more now as my gut is having more problems? Are my tube feeds too thick and making me sick? They ARE backing up into my stomach and coming out my insertion site. But, as long as I don’t eat I am not as sick…eating is definitely a trigger. But, does the combo of eating and tube feeds cause me a worse problem? Would I be less sick if I had no tube feeds during the day, less at night, and ate more? Or should I stop eating completely and rely only on tube feeds? I could never stop eating completely…I enjoy it too much, even knowing the consequences. Plus, I don’t want my gut to get lazy and make the whole condition worse. I don’t want to increase my nausea med because it makes me so tired and then I have trouble functioning, and my pain meds slow down my gut more so I am trying not to take much of that either. Do I try to treat the GP or the dumping syndrome more? Both are so debilitating…
I have a lot on my mind and I really want to make the right decisions that will get me as healthy as possible. I know I will always have issues and eating is always going to be a challenge for me. I don’t remember a day when I was able to eat and not get at least a little sick or experience a little pain, even since the transplant. I’ve had a problem with everything all along, but it was minor in the beginning so it wasn’t even an issue in my opinion in comparison to the 12 years pre-transplant. But now it’s so severe again…I am not going to let it take over my life and need to figure out how to get my life back, be as functional as possible, do the things I want to do, and live life in spite of my problems. I am not going to let my problems dictate my life. I have spent entirely TOO much time in hospitals this year and I refuse to live like this! I hope that these five weeks I am spending in rehab will make a difference and lessen the number of admissions, but I need to figure out how to keep my nutrition up and control my symptoms better…and I’m not sure at all what the solution is. This has spread beyond my gut…my entire body has become affected and it’s taking over my muscles and joints now too. I have so much pain and stiffness and experience periods of paralysis which have caused some of my falls and a lot of my pain. I didn’t complain about pain a whole lot before the transplant. Now I live with it 24/7 and it’s one of my most debilitating problems. I tend to wobble and lose my balance a lot. My left leg is weaker than my right so we are focusing on that. They are trying to help me learn how to work around problems…how I need to do things differently than the average person when something happens or as a way to conserve energy.
I’m 33. I’m intelligent, creative, fun, passionate, ambitious, and I have many dreams. I want to be there for people with DTP. I want to continue my fight for a cure through G-PACT. I want G-PACT to continue to change lives and be so active and grow. I want to be able to do more. I have so many ideas for awareness and knocking down brick walls! But I’m hindered because I’m often not well enough to devote as much time and energy as I’d like. I’m thankful for my many volunteers and supporters who help keep us going and make an incredible impact every day…there’s no way this can be done by one person. I am so encouraged by how much we have grown in just the past year! I anticipate many great things in the near future for G-PACT and our patients. I am pleased with our progress. But, I often have a hard time keeping up because I am struggling so much myself. That has to change. I know I am here for a reason still. I will never regret my decision to have the transplant. I don’t know what my future holds. I don’t know if this is a temporary setback, or if the underlying condition that caused this initially is going to continue to create more havoc. But I don’t let myself think about it. I just try to deal with each day and what I have now and do what I can, where I can, with what I have.
The past four and a half years, while some very challenging ones, have also been some of the best years of my life. I can’t think of a time period, including college, where I have met and loved so many new people. LCBC has played such a big role in my life and I am so thankful I have had the opportunity to live and meet and love so many new people in the past four years and for the service opportunities I have had. I need to get back to that. The good thing about rehab is that I do have permission to leave once in a while. I’ve been using that opportunity to go to LCBC as many weeks as possible. I always stop by the Wheelhouse to see my kids! I miss them SO much and can’t wait to get back! I also can’t wait to return to my work in the office at LCBC. More than enjoying what I do and having the opportunity to give back to a place that has given me so much in my life, I miss the interaction with people there and being able to escape my medical world several times a week. I like to go even when I am really tired or not feeling too well. I often feel a lot better if I get out the door and get some blood flowing by intentionally picking on them and aggravating Mike with my gold and black Steelers gear…and just the normal chit chat of what they are doing in life…Melissa’s role in “The greatest Christmas Pageant ever” at the Hershey theatre, what’s going on with the fam, seeing Braden with Tricia, hearing about normal life outside the DTP world. I miss hanging out with my Life Group and connecting on a very spiritual level with a group of people who care so much about me and who I also care so much about…a group where I feel open to share anything without being looked down on or fear of it leaving the group. They have been so supportive and loving through all of this and treat me as a normal 33 yo…not as someone who is an invalid. Max and Janae, the two leaders, visited me last weekend. They drove up in spite of how long of a trip it was and hung out with me for about an hour on a night when Max had to work and the night before church. We just talked about life…cats who like lasagna, iPhone apps…just stuff…it was nice to have conversations outside of the medical chat I have to deal with all the time. Sometimes you just don’t realize how much you miss or how important people are in your life until you are not able to do things with them as you normally would. I’m ready to return to society…and I’m not going to let this pain and my problems keep me from doing the things that I want to do. I think I will get help through this independent living program and I am hopeful that will get me on a better track and able to do more things. People here really praise the organization and think it’s exactly what I need.
Thank you for your continued prayers…and for supporting me through this. I’m trying to cope the best I can, but it’s really, really hard. I often downplay the difficulties, or I hide how sick I really am, but in all honestly I’ve been having a really tough time and your support, prayers, notes, comments, texts, calls, cards, and visits have really helped me through. I don’t know what I’d do or what state of mind I’d be in without the support of so many. I love all of you for what you do for me and I only hope that I will always be there for you too in time of need and in between too!
