Liver transplant - Let's support each other

Jim,
I was extremely ill for 6 months with a meld score of 27 and above. My Family doctor asked if I wanted to go on disability/ssI but didn't for personal reasons.
I received my liver by way of an emergency Transplant at Meld 40+ when not occupied I would rest at home. My family doctor shared that I had 6 months tops until a transplant was needed. Other than that sobering bit of news I learned all thing Transplant on my own and with the help of the conversations I had with a liver Surgeon once, and incidental conversations I had with Nurses during parasynthesis. Once I was transferred to the transplant hospital the all the services were available to me including Amy my Transplant Social worker, Leslie my Transplant coordinator, Dr. Kim and Nessin, Toto and Klein and Brook and Vesna post op Transplant. All totally professional and caring to whom I remain grateful to this day. I hope you have the same experience that I have had with your team

Jim,
I was extremely ill for 6 months with a meld score of 27 and above. My Family doctor asked if I wanted to go on disability/ssI but didn't for personal reasons.
I received my liver by way of an emergency Transplant at Meld 40+ when not occupied I would rest at home. My family doctor shared that I had 6 months tops until a transplant was needed. Other than that sobering bit of news I learned all thing Transplant on my own and with the help of the conversations I had with a liver Surgeon once, and incidental conversations I had with Nurses during parasynthesis. Once I was transferred to the transplant hospital the all the services were available to me including Amy my Transplant Social worker, Leslie my Transplant coordinator, Dr. Kim and Nessin, Toto and Klein and Brook and Vesna post op Transplant. All totally professional and caring to whom I remain grateful to this day. I hope you have the same experience that I have had with your team

I am a year and half into waiting for transplant. MELD is stable at 15 to 17. I am on long term disability. Worst issues are with fatigue and lightheadedness and foggy. Anyone relate? Thanks.

Yes, I was very fatigued for over a year before I was diagnosed with end stage liver cirrhosis (NASH) and did not realize why. I was diagnosed in May of 2018. My MELD score was 10 in September 2018. I did have an episode of hepatic encephalopathy (was not in a very coherent state one morning) and was hospitalized for about a day and a half. It was due to a high ammonia level in my blood. By December 2018 I was admitted to the Mayo Clinic in Florida with a MELD of 39 and in kidney failure. My MELD was brought down to 34 and the kidneys improved and I was listed at that time. My health declined very rapidly after the 1st of the year and with MELD of 40+ I received my transplant the beginning of February. I know it is difficult waiting and wondering when will I get a transplant.

Yes, I was very fatigued for over a year before I was diagnosed with end stage liver cirrhosis (NASH) and did not realize why. I was diagnosed in May of 2018. My MELD score was 10 in September 2018. I did have an episode of hepatic encephalopathy (was not in a very coherent state one morning) and was hospitalized for about a day and a half. It was due to a high ammonia level in my blood. By December 2018 I was admitted to the Mayo Clinic in Florida with a MELD of 39 and in kidney failure. My MELD was brought down to 34 and the kidneys improved and I was listed at that time. My health declined very rapidly after the 1st of the year and with MELD of 40+ I received my transplant the beginning of February. I know it is difficult waiting and wondering when will I get a transplant.

Well I am 3 years sober now so I go to meetings, I sponsor men when I can and I have a sponsor. Talking about things helps some. I wish I would have seen this support group sooner. Thank you everyone for your kind responses!

I am a year and half into waiting for transplant. MELD is stable at 15 to 17. I am on long term disability. Worst issues are with fatigue and lightheadedness and foggy. Anyone relate? Thanks.

@jim1208
I’m at Mayo Rochester. I just started year three on the list. My MELD has been all over the place from my current 11 to 26. At my last check up my doctor stopped my driving due to “overt signs” of Encephalopathy. I have been on medical disability through my employer since January 2nd. Luckily I live in the twin cities and attend a weekly support group for people pre- and post-transplant at the U of M. A little harder now I’m not allowed to drive. I have no idea how long it will be before I’m eligible for transplant.