Connect
Liver transplant - Let's support each other
What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?
Like
Helpful
HugInterested in more discussions like this? Go to the Transplants Support Group.
Connect
I've been on the list over a year....
-
Like -
Helpful -
Hug
1 Reaction@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
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.
-
Like -
Helpful -
Hug
1 Reaction@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 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.
-
Like -
Helpful -
Hug
3 Reactions@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?
-
Like -
Helpful -
Hug
1 ReactionI 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!
-
Like -
Helpful -
Hug
4 Reactions@leahd, I have been off line and I want to check in with you now that I am back to my laptop! First and foremost-It is not even possible to overshare. Your background is your story and it is a remarkable testimony to your strength and determination to rise above the difficulties that have surrounded you. Do you know what an inspiration that you are? Even if you don't hear a response, I can assure that your example is helping to lift someone who is enduring a similar journey.
I would enjoy hearing from you and chatting with you. I also find that is is helpful to be able to talk to others who have been thru this, and who are going thru this. How are you doing as you approach an anniversary? Do you do anything to celebrate - dinner, new outfit, day off to pamper yourself?
-
Like -
Helpful -
Hug
3 Reactions@rowdyramsey @gaylea1 My symptoms did increase dramatically in the last 4 - 6 weeks prior to my transplant. I was doing extremely well most of the time, no real effects except isolated HE episodes, but then I suddenly got severe edema and ascites. I gained about 35 pounds of fluid weight. During the summer I was being told it would probably be November before I would get a transplant. I could not imagine going that long feeling as I did but then on September 22 I got the call and I had my transplant on September 23.
JK
@leahd I found writing that letter to be one of the most difficult things I ever did. I did it though and about a year later I heard back from my donor's parents. I had a guideline that had been given to me before I left the hospital. If I still have it around I will scan it in and attach it to a later message.
Please do not feel that you are less deserving than someone else. I felt that too somewhat because I was two days short of 69 when I had my transplant. I thought that maybe it should have gone to someone younger. It didn't so I am here, and healthy, and my son and daughter celebrate that. I am so very happy that I will have more years with them.
JK