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Liver transplant - Let's support each other
Transplants | Last Active: 6 hours ago | Replies (1567)Comment receiving replies
@contentandwell @biteme
Yes lucky so far. I have stage 4 cirrhosis with mild HE and small varices. Having issues with diaherria, interstitial cystitis and vertigo among others. Mayo is calling me in for a check. They are so good. Its a 5 hour ride but I don't mind for them to give me some answers. My PCP is awesome and watches me like a hawk too.
Sometimes I have to be my own cheerleader though.... some people tend to think I'm fine or will get better. Not an understanding support group. But, I look at it as that gives me more time to prepare them for the not so good days. They might be very surprised judging from what most of you are coping with...
Keep your spirit friends....we are stronger than most!
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@jeanne5009 I always found my visits to Mass General to be reassuring too. You are lucky to have such a good PCP. I think mine cared but was sort of clueless.
I’m surprised that you are stage 4 with such a low MELD. I hope your HE is not too troublesome. My episodes were distinct and lasted from less than a day to about 3 days - those put me in a hospital. After being put on xifaxan with no lactulose I didn’t have an episode for almost a year. When they resumed I had to take lactulose also. The resumption was an indication that my liver had deteriorated further.
I looked and felt well right up until the last month. People were always commenting on how well I looked, even my PCP.
I hope if you do eventually get worse days that they will be only for a fairly short time as mine were.
@biteme you were actually lucky to have a gall bladder problem since it revealed a much bigger problem. That’s wonderful that you are feeling healthy and being positive. If you can keep that attitude it will serve you well. Even my PCP commented on that with me, that I don’t let things defeat me. It does help a lot I think. It certainly makes your life better.
I hope the results of the CAT scan are not bad, and that you will share them.
JK