Liver transplant - Let's support each other

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!

@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?

@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

Sorry to change the subject....has anyone heard the term “activation list”?
A co-worker of my wife indicated recently being placed on the activation list however this person has been on the waiting list for some time.

Just curious what the difference is if any. Thanks.

@rodney9999 I think that just means that the patient is an active candidate for a transplant. Before your MELD reaches a certain number you may be waiting, but not “actively”. I could be wrong but I can’t think of any other possible explanation.
JK

I've been on the list over a year....

During my pre-transplant period, while on the waiting list for a liver due to PSC, I was 'temporarily inactivated' when my blood lab results indicated possible cholangiocarcinoma. This required me to be inactivated until a biopsy could be performed and resulted in an "all clear" diagnosis. I would then be re-activated on the transplant waiting list.

@rodney9999, @contentandwell
Here is the definition of Active Candidate from the Organ Procurement and Transplantation Network>Glossary https://optn.transplant.hrsa.gov/resources/glossary/
"A transplant candidate eligible to be considered for organ offers at a given point in time. Some transplant candidates are temporarily classified as “inactive” by their transplant center because they are medically unsuitable for transplantation or need to complete other eligibility requirements."

Rodney9999, this is an excellent question and this is the perfect place to post it. I hope the definition is helpful to you. There is probably no way of knowing what might lead to someone being inactivated, and for how long. But it does happen, and when a person is reactivated, they return to their 'place' as far as ranking by time already spent on the list. This was all new to me when it happened, I guess you can say that I learned by experience.
It is good to hear your voice! How are you getting along?

Hi @racing212 So how are you doing a year out? What is your MELD now? I was on the list for almost a year and a half. I expected to be waiting at least two more months but a transplant came through earlier than anticipated. I was at MELD 28 at that point but in another couple of weeks I am sure that would have increased to 30 or 31.
Are you feeling well? I believe you had mentioned being on lactulose and xifaxan. Are your HE episodes fairly well controlled now? Mine were pretty well controlled when I was taking xifaxan but as my conditioned worsened they did resume, but not as frequently. They did add lactulose back in to help even more.
I went back and checked your prior posts and see you go to Mayo in Rochester. Is that far from you? I believe if it is that when you are getting very close they will have you staying there so you will be there when a compatible liver becomes available. My transplant was at Mass General in Boston so that's only about 55 miles down the highway and they were able to just call me when they had a liver.
Try to not get discouraged, it will happen. We will all rejoice with you when it does. Please keep us up to date on how you are doing.
JK

I was in hospital in august . my amonia levels went up and i passed out. My meld is 17. I do go to Rochester and its about 3.5 hours away