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Liver Diseases Support Group: Let’s connect

Liver Diseases | Last Active: Jun 14 11:16am | Replies (20)

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@katebw

I’m now 57 and had a liver transplant 3.5 years ago. I learned for the first time I had end stage liver disease in March of 2021 with a fluctuating MELD of 28-32 and I had a transplant at MassGen Hospital that October. The cause of my liver failure is thought to be autoimmune and related to my long ago diagnosed ulcerative colitis. I had a terrible time in those months leading to my surgery- the worst part was 4 episodes of hepatic encephalopathy and then I developed mysterious fevers. A high protein- plant based and meat- low salt low fat diet and copious amounts of water helped ease some of this. I also had physical therapy to keep strength and balance. Since my transplant I’ve been well and careful. I currently eat a similar diet but less as my appetite has changed. I’ve had fluctuating liver enzymes but this is easing. I walk most days and go to the gym when weather is bad. Liver disease I’m told is a muscle wasting disease so exercise has been important. I don’t drink alcohol or use Tylenol, or OTC meds, I take my prescriptions like a champ. After a year of terribleness, 15 hospitalizations etc I’m amazed at how peaceful life is and how normal I feel.

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Replies to "I’m now 57 and had a liver transplant 3.5 years ago. I learned for the first..."

I have been looking for support groups for 9 years . I was diagnosed at the age of 36 with alcoholic liver cirrhosis endstage. They had given me two weeks to live . Here I am 9 years later still waiting but I'm living life like I don't have cirrhosis. Everyone around don't even believe it when I tell them I'm waiting on an organ which makes it so hard and so scary for me. I missed the call for my liver so now I'm inactive on the list. But I'm also torn on receiving because I know my life is about to change from living normal to medication or possibly being that statistic that doesn't make it past a few months. My meld score is 7 ,I've had lesions so the doctor added points to rush my transplant by saying I had liver cancer but it turns out that I don't as of now. My question is how did you get away from that fear that you spoke about ? I am so scared of the surgery I ball up and cry but mainly because I feel great right now and look okay. So I'm like why do it and not wait till I'm at a higher meld?