Hello Michael and welcome to the forum! Sorry I didn't respond sooner, I work weekends. I am my husbands caregiver, he has HepC and cirrhosis, he is currently waiting for a transplant. He was listed in June, but it seems like it took forever, to get on the list. We have really been feeling very desperate lately, he is having alot problems with the fluid despite diet and diuretic theraphy. Hope to hear back from you soon.
Michael, you are very fortunate that you are able to care for your self. My husband is not able to do that. He has trouble with encephalopathy, often also...to the point that it does scare me to leave him by himself while I work. He went into a coma in April. He has lost quite a bit of his muscle mass too! He has had problems with malnutrtion also, so he drinks nepro to help with that. He was in the hospital for a week last month, They put a catheter in his abdomin, and drained fluid off daily giving albumin replacement as well. He lost over 25 lbs. of fluid in that week. Now it looks like they will probaly being doing more paracentesis. I'm not really sure what the plan is going to be, because his renal function is taking a beating. Hopefully we will get the call very soon for a transplant. We live in Arkansas, his transplant will be at UAMS in Little Rock. So we are kind of neighbors here. The waiting time in Arkansas is not a very long wait actually, the clinic is pretty new, it opened in April of 2005. My husband has been on the list for 2 months now. My prayers and thoughts are with you!
You wrote "I have only 10% functionality of my liver, so a living donor option is not applicable." This refers to your liver. What stage are you in? Are you in stage 3? What percent of your liver must be working to get a living donor to give you half? Please let me know.
Jarlett: I have been told by my doctors that a partial transfer is only applicable if the recipient has no more than 60% damage, and it is very rare for the transplant to be done at that stage. Usually living donor transplants are done with minimal damage and the "if, ands, and buts" MUST be in place for a successful outcome. Remember, with a living donor you then have two patients going under the knife. all the more reason for the transplant to be successful.
The doctors have ascertained that I have only about 10% function through my bllodwork and reactions to my meds. I asked if I needed to have a biopsy to determine the level of damage to my liver that the hepatitis has caused, but the doctors told me that a biopsy is not always neccessary. My meld score is holding steady at 14. 2 years ago my MELD score was 18-19. The meds I have been on have bewen nothing short of a miracle when it comes to my staying healthy.
When I was first diagnoised, I had 3 hospital stays due to encephalopathy, lapsing into coma each time. My meds have kept the virus from doing any further damage to my liver and it seems that I have actually gained back some of my liver funtion. That, of course, is not the case, but the regime of meds and my diet are proof positive that I can live with this horrible thing! I am still not able to work (been on disability for 1.5 yrs.) because of meds side effects. I have to pace myself due to the extremem fatique that seems to come quicker with each passing week. I also have insomnia sooooo bad....obviously leaving me exhausted. The diaretics keep the fluid retention controled and the laculose (YUCK!) keeps my toxicity in check. Currently I am taking Hepsera and Baraclude (anti-virals).
So with all of the meds, the doctors monitoring, and diet I seem to be "stuck" in a good place....but as we all know....the waiting is the worst thing to deal with (thank goodness for thearpists!).
I hope this info helps you with whatever you are seeking.
Take care Jarlett...