Guest guest Posted April 14, 2012 Report Share Posted April 14, 2012 As of last week, I was officially placed on the waiting list for a transplant. I'm feeling equal parts scared and exhausted and relieved. I'm glad that a transplant will be possible for me, but I wish I could stop feeling so anxious about it all the time. But I'm also feeling confused about my MELD and how sick/healthy I really am. I was diagnosed with autoimmune hepatitis and cirrhosis/ESLD in November, and I was almost completely asymptomatic, at least outwardly. I never would have known I was sick. When I was first diagnosed, following a liver biopsy, my MELD was 19. It seemed terrifyingly high to me at the time. I was still processing the idea that I was less than healthy. Since then I've been working to get my condition under control, manage all the complications we found out about (ascites, varices, portal hypertension), and get my name on the transplant list. But now that my name's been added, I've been told my MELD is 15, and I'm having mixed feelings about it. I guess I should feel good that my MELD is lower... I just don't understand what that means exactly. From what I understand, my condition is not reversible, and at this stage my liver can no longer heal itself. So why is my score going down? And if it goes down another point, I'll be de-activated on the transplant list. So in a way I also feel like all that work and all those tests I ran and all the stress I went through might be for nothing. I don't get it! I don't know how to feel about this at all. But I should be glad as well that I'm not as sick as I might be, that I'm not in pain and I'm mostly still able to manage day-to-day life, and that I am outwardly healthy. I'm able to work and do most of the things I want to do. Though I find my medication regimen hard to deal with at times. I was wondering what experiences you all have had with changes or fluctuations in MELD score...and/or coping with the waiting list. The one thing I keep thinking is that I wish this could be over and that I could get back to my life, whatever that means. I guess maybe there is no going back, transplant or no, my life's never going to be as simple as it was and there are always going to be lots of medications and immunosuppressants in my future. Quote Link to comment Share on other sites More sharing options...
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