The happenin's from Pitt....and life and stuff....

So I went to Pittsburgh last week and basically returned knowing what I did before I went- I have Dumping syndrome, Gastroparesis, Pseudo-Obstruction and there is nothing else they can do. I am not eligible for TPN at this time because of my high infection risk and lack of veins. I am healthier and more active than before the first transplant, so re-transplantation is off the table for now because of the high risks associated with that. I must admit, even the mention that it's off the table threw me for a loop because that is not even an option in my opinion at this point anyway! It hadn't crossed me mind! That could only make things worse if it doesn't work out and I don't feel like I'm there yet either! Basically- deal with it all the best I can. This is what I have been hearing since I was first diagnosed! Ho Hum...

Dr. Kareem noted several things while there. One is my hair loss- instantly. He is quite concerned about it. While I think it's just poor nutrition...still...he seems to think there is more going on. They did a lot of blood testing including thyroid, which came back negative, some testing to see if I am sharing genes with the organ donor, zinc levels, and other things. Another thing he noted is that he has a number of patients who have been transplanted as a result of CIP and the condition has returned a few years later. He did a paper a couple of weeks ago on four of us and included some thoughts on why that might be the case, but basically came to the conclusion that they don't know and it's important to continue the research. This interests me because just a couple of years ago he told me he loves CIP because it is dormant- once you take the organ out, the condition is cured. Apparently, he has since discovered this is not the case in a number of people, especially those who developed it later in life and were not born with it. There is still so much they have to learn, and he acknowledged I am teaching him. Not sure how I feel about that. I guess if I have to go through it, I might as well educate him in the process...I just wish there was a simpler way to do it!

In addition, he noted my case is not normal and he KNOWS I have an underlying condition causing things to deteriorate again. He looked at my hands and noted that one is a different color from the other.He commented on the abnormality of the appearance of the veins in my arms and how they run. He noted a lot of the other abnormalities I have described in mitochondrial disease in a lower blog. My coordinator encouraged me to pursue it because Kareem is really seeking the answers for the cause right now and if I can figure it out in my case, it may help others as well. So, I am going to begin communications with a physician in Cleveland and may make a trip down for testing, which includes a muscle biopsy, in the near future. I may not be helped at this point, the damage has been done, but perhaps the progression could slow down as I am rapidly developing newer problems and my GI tract is really start to enter a bad point again. In addition, if they can learn anything from me to help others in the future, I'm all game for doing that. I'm as ready to find a cause as they are so we can prevent or cure the problem in the future for others. He did mention I could be in chronic rejection and that they may not know about for a long time. It often doesn't appear in testing for a while. I don't know if that's the case or if it's just the effects of the conditions combined and inability to manage the complex diet. I guess only time will tell.

Having said that, I am surviving on string cheese, scrambled eggs with cheese, cottage cheese, sugar free yogurt, occasional mashed potatoes, and rarely pasta. Pills and fluids in small amounts are my main source of nutrition. I also only really eat once a day and that is enough to send my gut into a complete tailspin...and the "really eat" is scrambled eggs...or diabetic yogurt...or 4 oz of cottage cheese. I am often up all night sick and in pain just from that...abdominal and back pain I'm trying to avoid my phenergan and extra pain meds because they wipe me out beyond function and I can often deal with the symptoms much better than the sleepiness. I'm concerned. I ache all over all the time, am weak, fall a lot, unbalanced, and generally feel unwell. I'm tired all the time and get frequent, severe migraines which then make me even more nauseous! I was up all night the other night with pain and nausea so severe I was literally in tears and screaming out for some level of relief...I'm strong and rarely do that. I'm tough and have been through worse, but the other night I was wondering how much more I can handle.

It's so tough to know that every single bite I put into my mouth is going to make me sick to some degree, no matter what it is, but I have to eat anyway. I really wish eating wasn't required for survival. Something that we are supposed to enjoy on earth is something I completely dread and brings me such anguish.

I wake up in the mornings still sick from the night before and with a cough and chest pain from my LPRD (swallowing disorder) and overall slow motility. After a little while, I start to feel better and start doing things. It's a challenge because if I don't eat I actually have more short-term energy and can do more, but once I do eat, I become completely non-functional and fall asleep! It's not healthy to be in either extreme! Then, of course, the overall impact off not eating well over the long-term sets in and I feel bad either way I go. But I continue to do as much as I can!

I saw my osteoporosis doctor on Thursday. She added more testing into the hair loss and suggested that I see my dermatologist as well. She mentioned I have lost bone mass again in the past year and doubled my calcium. She wants me to return in six months instead of one year this time. I am supposed to take my annual Reclast infusion at Hershey Med as soon as I can get into the infusion room. Great...they get to put in an IV line for a ten minute infusion! HA! It'll take them a couple hours just to get the line in!

I'm really tired and sleeping way more than not, so I have trouble writing much right now or keeping people updated on anything anymore- whether G-PACT, Life, my health, or other things. I go through crash phases all the time, but they are becoming more frequent the longer this goes on. I HOPE something starts working right so I can get back to at least 1,000 healthy calories a day and get some spunk back. Plus, I'm tired of being up late at night reeling in pain or fighting off nausea...and having to choose between nausea or being crashed out on pain or nausea meds for days! It's a tough balancing act...but in general I choose nausea/pain over crashouts!

G-PACT continues to go awesomely...I love all my friends, volunteers, and so many who are so passionate! To the ones who are actual volunteers, to those who support us in any way by awareness or donations, to those who simply follow us seeking the help and hope we provide. Everyone is so important and we are all fighting this together, no matter what capacity.

We've had a number of events going on lately and have a new FR director and new PR director. We've also run into, yet another, complication which points to the need for more awareness! Medicare recently decided to stop covering idiopathic GP as a principal diagnosis. We have a large letter writing campaign going among patients and loved ones, have all 28 members of the Digestive Diseases National Coalition active in fighting this decision, top motility doctors, and top attorneys as well. Our voices are being heard...we have declared war. We can only hope it makes a difference. So many of our patients have idiopathic GP and are on Medicare. They face the risk of losing coverage in 2011 if we can't get this decision reversed.

Please pray for all of us at G-PACT as we fight this, in particular our VP/Esq. and myself. We are both feeling the pressure of this and are feeling overwhelmed with the amount of work involved to ensure we protect our members who so desperately need to have this decision reversed. What Medicare does often is a foretelling of what other insurance companies will do, so what we accomplish this first time around is vital! The decision should not affect me since my primary diagnosis goes under the Medicare transplant program, not GP, but there was a time it would have definitely impacted me so I understand the fears and frustrations shared by my many friends! We are determined to get this reversed...the last thing GPers need is another thing taken away or not approved, only adding to the stress of dealing with the condition and the loss of hope.

I still am active with LCBC and just love it and the people there more and more. I like to spoil the Wheelhouse kids, and my wheels are always turning for ideas (so to speak!) on how to take it to a new level and create an environment which provides uniqueness each week so that the kids who participate each week always want to come back and look forward to something different on a regular basis. It's fun...I enjoy being able to make a lot of decisions and plan a lot of things. My current project idea is to make a couple of fleece, tie-knot blankets of video game characters to use when watching movies on the body pillows! It gets cold in there sometimes...and besides...a movie just isn't as good without a blanket to curl up under, even if it's really hot out! :)