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Liver transplant - Let's support each other

Transplants | Last Active: 4 days ago | Replies (1617)

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@rosemarya

You have a smart son. Bravo to him for being so aware of his health and for being an advocate for himself. Early on my PCP referred me to GI because he is wise to admit when something needs a specialist's opinion. After reading many other experiences I know how blessed I am to have recieved immediate referral. And then, when it was time for me to go to liver transplant clinic, my GI knew it, amd made referral. Like your son, I didn't have the long wait for appointment, but was seen the following week at the liver clinic at the Univ of Kentucky where I was evaluated for transplant, and listed. I received excellent treatment there. But when the indication of cholangiocarcinoma (and unsuccessful biopsy samples) entered the scene, they knew to refer me to the Mayo Clinic. For me things did get complicated. But by taking one step at a time, and following the direction of my excellent medical providers, I am here and healthy today.
I never experienced any HE episodes, but from the beginning, we were told to be aware of signs. Goes to show how everyone is different!
One of the most comforting things that my GI told me was that PSC patients did well after transplant. And also that by knowing in advance, we had the opportunity to practice healthy lifestyle to be better prepared to carry on.

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Replies to "You have a smart son. Bravo to him for being so aware of his health and..."

@rosemarya You really were fortunate to have such a good PCP. I now am very aware that if I, or my husband, ever had anything that was not quickly diagnosed we would self-refer to Mass General. The time I wasted waiting here could have been tragic. Of course with me, the main thing they were trying to figure out was the cause of the episodes of confusion I was having so until the neurologist suggested my liver that was not even being considered.
JK