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Liver transplant - Let's support each other
Transplants | Last Active: 2 days ago | Replies (1617)Comment receiving replies
I came to Rochester after my son urged me to. There a week, I learned more about cirrhosis of the liver, plus had more procedures than I had in two months in Western North Carolina. My gastroenterologist (East Tennessee) was content to have me lose water weight via diuretics, and monitoring with periodic blood panels. He told me no transplant center would even talk to me if I had consumed alcohol within the year (I quit entirely in early July). He didn’t give me a MELD score and downplayed knowing the cause of my liver disease (what will that change? he asked). That week at Mayo was a breath of fresh air for me, as well as the nod to take responsibility of my situation and to be proactive.
Although I live too far from any of the Mayo locations, but Duke Liver Transplant Center is 4 hours away by car. I’ve been invited to go through their 3-day screening and education for program mid-November.
So thankful my son insisted we go to Rochester. Reminds me that even doctors aren’t always right.
Push on!
Replies to "I came to Rochester after my son urged me to. There a week, I learned more..."
@skipmarsliver I also was on diuretics throughout my journey to transplant. I had edema but no other fluid build up in my body. Here in Ontario I was required to go to AA and had to prove my abstinence of alcohol. I was already not drinking but they had to have proof. I was listed within 6 months but my MELD was already at 27. I had to go through 3 days of testing prior to that. My diagnosis was based on an HE episode that put me in a coma. I would insist on getting my MELD score as that gives you an idea as to how far the cirrhosis has advanced. I am coming up to my one year anniversary post transplant. This group will be a wealth of information as to their experiences. I am so grateful to everyone who commiserated with me and offered personal solutions to many of the different effects of this disease. They're always here to listen.
@skipmarsliver I am so glad that you went to a major medical center, Mayo, and that you will now be a patient at another one. I too learned how important it is to do that and went to Mass General where I eventually had a liver transplant.
I am looking forward to hearing how things work at Duke, and what they determine your MELD to be.
When I first started at Mass General mine was 11 but it quickly went up to 18 and then in about another 9 months or so it was 28, the MELD at which I received a transplant in September 2017.
It really such a relief to be a patient at a medical center where they are knowledgeable about your condition.
JK
@skipmarsliver, I am thinking about you. This is the season of the year when my pre transplant health took a serious tumble, and I think it is making me quite sensitive emotionally these days. So I want to ask you, How did the 3 day screening and the education program work out for you? Will you become a patient at Duke, as you had hoped? What kind of followup labs and monitoring will you be doing?
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@skipmarsliver, I want to reach out my hand in a virtual welcome to Mayo Connect. I am happy to greet you and to welcome you from my home in Kentucky. I am 10 years post liver and kidney transplant which I received at Mayo Rochester.
Do you know how brilliant your son is to point your compass northward to Mayo in MN? Unlike you, I did get top level care by my local doctors, and it was my own medical team that pointed me to Mayo. I am forever grateful that they knew twhere I needed to go!
Do you anticipate being placed on the transplant waiting list as a result of the 3 day screening and education at Duke? Will the tests that you had performed in Rochester be used as part of your qulifications for being listed?
What questions do you have about the evaluation process or about transplant?