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DiscussionLiver transplant - Let's support each other
Transplants | Last Active: 17 hours ago | Replies (1623)Comment receiving replies
Replies to "A number of people have commented on getting sicker over time as they waited on the..."
My doctor told me early on, yes you are sick and it sounds crazy, but you're not sick enough for transplant yet. My meld score was in the upper teens. I then had verifies bleed in my esophagus that had to be tied because of limited flow through my liver due to cirrhosis. Them my portal vein started leaking into my body cavity. At first having a perisenthesis (body cavity pumped out) every few months. That got worse as the months went by. In the mean time my liver was taking out my kidneys. My meld score climbed into the low to mid 20's. For the last 2 1/2 before transplant I was being pumped Monday and Friday averaging 12+- liters of fluid per week. On Tuesday, Thursday and Saturday I was on dialysis. My meld score climbed to 25. One of the last tests before transplant was a heart catherization. Thr doctor told me the contrast needed was hard on kidneys. I told him go ahead, I'm going to die anyway. 2 days later my kidneys shut down. What sounds terrible turned into a blessing in disguise. My meld score shot up to 29. 7 weeks later I received a joint liver and kidney transplant. 13 1/2 hours under the knife 10 units of blood later hear I am.
Good luck to you on your new voyage ahead!
@darring1, Good morning and Welcome!
I expect that others will want to join this conversation, in the meantime I have caught myself using the terms like, 'getting sicker' and 'ill' to indicate the increasing side effects/symptoms that accompany liver failure and cirrhosis. Maybe someone will share a better term.
To my understanding, there are symptoms of liver disease that are common for all liver diseases. Perhaps you have heard of some like: tiredness and fatigue, nausea, ascites (accumulation of fluid in abdomen), unintended weight loss or difficulty gaining weight, fevers, portal hypertension...
Some patients have few while others have enough to become hospitalized prior to transplant. I have been told that everyone responds differently, and if you have a several patients with the same diagnoses liver disease, each one will have a different combination of symptoms.
I want to encourage you to scroll back to Feb 1, where you can meet and read what @katebw, @katebw, @maw90455, and others have/are currently experiencing. And you can easily ask a question to anyone by replying - or by using their @name in your comment.
@darring1 - What brings you to this conversation -Are you a patient or a caregiver? How can I be of help to you?