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…