Post Number: 55
|Posted on Sunday, October 23, 2011 - 01:17 pm: ||
I have cirrhosis and am on the waiting list for a liver. MELD was only 15 as of last month but I have been feeling worse when my MELD is low as opposed to when it was higher.
This past entire weekend I have been very very weak, have not been able to leave the house at all and hardly able to leave the bed or couch. My legs are very weak and my hands tremble a lot. I know fatigue is expected but is it constant or does it come and go from time to time. Just looking for SOME relief, I feel worthless.
|"Joan of Arc had style. Jesus had style." |
Post Number: 53
|Posted on Sunday, October 23, 2011 - 03:01 pm: ||
Bob, I started getting very weak and tired about 6 months before my Transplant, I started with the tremors in my hands and fingers about 3 months before, and my legs were aching for at least 6 months, I had a lot of problems with itching for almost a year.
For about 6 months, I could barely get up on my own, and it was difficult at times to walk very far without being very tired.
|Hope is the feeling you have that the feeling you have isnít permanent. -Jean Kerr|
Post Number: 86
|Posted on Sunday, October 23, 2011 - 03:04 pm: ||
Huz has the same indirect relationship - high MELD->feels good. lower MELD->feels terrible. I just asked our Hepatologist about this, he shrugged his shoulders. To me, it seems when his Bili goes up, THAT is what makes him feel worse. Bilirubin is only 1 of 3 components to MELD. Each time labs come back, I track all 3 numbers (Bilirubin, INR and Creatinine) for my own edification.
Shaky hands (esp white palms) could be Hepatic Encephalopathy. Are you clear-headed lately? Ask your partner / daily friend / adult child for their honesty here. Lactulose (Kristalose) and Xifaxan clear up HE pretty quick.
I always say, Huz has fair days and days, you never know what you are gonna get. The fatigue, or lack of good sleep, is part of the liver failure unfortunately.
Best wishes to TransplantLand.
|Mariel, wife of PSCott |
Post Number: 19
|Posted on Monday, October 24, 2011 - 09:08 am: ||
I'll be the odd man out here. I'm a HepC patient who did more trial med studies over the last decade than I can count trying to cure that disease (didn't get to the latest "cocktail" which seems to be more effective). I had advanced cirrohsis (4 out of 4 on the scale for at least 3 years) prior to developing cancer. My MELD started at 18 (cancer) and I was transplanted when it was 27/28 or so. Therefore, I never had MELD go up and down like you do. To be honest, I felt better, stronger and had more energy before the transplant. I don't say that to freak you out, I'm just one of those guys who is still dealing with the "bumps in the road" issues some of us have. That said, everyone's different. If you're taking meds, I'd suspect that for the shaking. (My handwritting is unreadable now). I went to work everyday, including the day they called me. I did take naps at mid-day and that helped. I'm 61 now, but from my mid 50's I napped, some of which might have been "normal" anyway.
Liver transplant 06/09/2011
Post Number: 5
|Posted on Monday, October 24, 2011 - 12:09 pm: ||
Wife suffered extreme exhaustion for 3 years prior to her transplant. All of the issues you stated vary tremendously between individuals. Even after the transplant, there is some fatigue, nowhere as severe as before. Also, all the rest and sleep in the world before the transplant didn't make a difference, her fatigue continued no matter what foods we tried or exercise, the exercise only made it worse. Her quality of life was very, very poor but we did all we could to make her comfortable, it was not easy, but post transplant has been a blessing so far, even with some new issues.
Post Number: 20
|Posted on Tuesday, October 25, 2011 - 07:01 pm: ||
bob.. i had cirhosis and my fatigue was very serious. I couldn't walk 20 ft without needing a rest and being out of breath. Had transplant Oct,. 2009 and have more energy than I've had in a very long time. I walk in the park every day and go to exercise classes to get my muscles and endurance back. Life is pretty normal for me now. Hang in there. Fatigue is normal and most feel more energy after the transplant.
Post Number: 302
|Posted on Tuesday, October 25, 2011 - 08:50 pm: ||
I was like jj_bytes. I had more energy (except for the six weeks immediately preceding transplant) than I did after. It took me 15 months to get back to the old me. I was 58 at time of transplant.
I was at a MELD of 13 and felt pretty bad, but went to work every day I was not in a hospital bed. I had fatigue, no appetite, shortness of breath. My boss told me to nap as I needed to during the day. When I was transplanted my MELD was 28 or 29 and I felt exactly the same. I would have worked that day had I not gotten the call.
Post Number: 2098
|Posted on Thursday, October 27, 2011 - 01:48 pm: ||
I had trouble with fatigue issues for a long time before I was put on the transplant waiting list. This for me was due to the fact that my illness centered on the digestive tract making it harder to get in the nutrition that I needed. I was at a very low weight before my transplant. It did not help that at that time I was on TPN, or intravenous feeding, which had lead to liver damage even at total daily amounts of calories that were less than I needed to gain weight and even maintain, such that I did lose some while on the TPN. This was after my total digestive tract had deteriorated in function. I still have some issues post transplant related to fatigue which again I believe are the result of my nutrition and not being able to gain weight even now. Exercise or music can sometimes help me, and I have been told by my doctors to exercise some because not doing so could lead me to becoming weaker and I also have to worry about keeping my bones strong. It can be hard to find the right balance, but I am trying. I was never told what my MELD score was, just that I was very high on the list if not the top. I hope you can soon find some new sources of energy and strength. I will keep you in my thoughts and prayers. Many hugs.
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital