New Transplant Blog Posts

Thanks Rosemary. I will do that.

@gaylea1 I agree with the others, it can't hurt to check with your transplant team. Since you do not have a temperature t is probably just a cold, nothing to do for it, but they can recommend which medications are OK for you to take, there are some that they rule out. I have a list of some of the more common medications that are OK and that are not OK.
Let us know what the team has to say.
JK

Had my 6 mo.visit to Mayo...up a Meld point to 7....dont laugh...lol
Maybe some day I will be sick enough to get listed. They did find test
results indicating auto immune hep..so that will change things a bit.
I have subtle changes that they have alerted me won't go away or get
better. So...I will read and write and carry on about my life as normally
as I can...

Just got back from Mayo and the Dr. said because I was stable I could have
the Shingles vaccine. Guess it depends on a lot different reasons. Case by
case.

@jeanne5009 With such a low MELD what symptoms do you have, and how was it caught so early? Maybe if you are lucky it will never get to the point where you do need a transplant. The mother of a woman I know had cirrhosis for 10 years and was fine with it.

You mention the shingles shot in a different post. The reason I am not supposed to get it has something to do with my immunosuppressants and of course you are not on them yet. I know that Mayo says it's OK to get post-transplant but MGH, my transplant center, is still being very cautious.
JK

@jk volunteer mentor

Found it on bloodwork at my Medicare 65 check up. Further tests and a biopsy confirmed Stage 4 Cirrhosis. I have a lot of connections to causes but now they say it was likely due to NAFLD and progressed to cirrhosis. Im a carrier for hemochromatosis and recent tests indicate auto immune hep. I am very gradually deteriorating. I have mild HE and varicies. No ascites thank God. Going on 4 years now and have tons of symptoms but nothing like what I hear about. Mayo evaluated me and said I was too early so they watch me. I go for tests and blood every 6 mo. and my local Drs. send them reports. Not sure why the Meld score is so low but Im not nearly as sick as most of you. Im very pro active and enjoy learning all about the amazing human body! Very lucky too!

@jeanne5009, I am happy to see your response, because I had been wondering about how you are doing. I remember reading and sharing with you while you were struggling with so many bothersome symptoms like itching, nausea, fatigue. Have these things eased for you?

Yes depending on the day or week...I still have itch, nausea, and the never ending fatigue. My life is much more limited. I was looking forward to the trip to Mayo but it took me 3 days to recover. Most of my days I struggle to get to PT for my shoulder and foot....The fall this summer changed everything even though unrelated to the liver. LOL...somehow the liver rules! Im making great progress with my PT and am looking forward to getting back to 99.9%.

@jeanne5009, The liver sure does rule. And I realize from my experience how tired I used to get with liver disease. You are doing the very best thing for yourself by accepting it (not easy to do) and by allowing yourself the recovery time.
I bet that you are encouraged by your progress with the PT. 99.9% is a fantastic goal and an amazing accomplishment for you since you are having fatigue, So, how often do you see your local docs, and how often do you go to Mayo? I can see that you are being closely monitored, and that is a good thing.
I have some questions for you, and please only answer if you are comfortable to do so. Are you on the transplant list yet? Have the doctors given you any thoughts on whether you will remain at a steady Stage 4 level, or do they think that you will eventually need a transplant?

@jeanne5009 Thanks for your response. I was curious because the first symptom I had that really alerted my doctor that something was wrong was HE episodes. Prior to that I did have symptoms -- low platelets, shaky hands, and more -- but they didn't cause much concern. I presume the blood work tests that were troublesome were ALT and AST. Oddly, mine were never very high! My cirrhosis was also from NAFLD which of course progressed to NASH. I never had ascites until the very end before I had my transplant, but I did have edema. I never really had ascites either.
As you go through this journey please feel free to ask questions to any of us who have been there. It sounds as if your cause and mine were similar but once it becomes cirrhosis I think the differences disappear. I hope your HE stays mild. Mine was more serious but not nearly as serious as some people have it, and there are of course some people who never have it at all. It's a pretty scary thing to be so confused.
Through it I too learned a lot, I never really knew just how important the liver is. I sure know now.
JK