Living Donor

What about your Son and best friend that offered... Were they not a good match? How you doing? Big Hugs

Aren't you the one with the American Liver Foundation background...or one of us is...let's ask them. ML

I found a fact sheet that is somewhat helpful, at least it gives some centers that DO have programs for unrelated donors:

www.livingdonorsonline.org/liver/liverfaqs.htm

Have you thought about being dual listed?

Good Morning!

This, from your posts in Feb 2014:

"I've had AIH for at least twenty years. After the first three years, I was able to get off prednisone and imuran, but the damage was done before I realized I was ill, and so my liver is all cirrhotic. I was listed for transplant while I was still taking the drugs, but in the end, I was very stable and so I unlisted."


I guess the big question here is....What is your MELD?

If you are stable with a low MELD, but have cirrhosis complications...you are like many on this darned journey. Waiting is so frustrating. But unless they do something with getting donors or artificial parts, waits are part of the process.

Unless you are in the MELD 22 range, you could stay listed and cared for in NY, then dual list out of your region. And yep...a pain to uproot for a transplant...and more expensive.

I feel for you. My husband is in the same boat. Sits with low MELD in mid-teens, but has significant quality of life issues with HE, edema, and crushing fatigue. Stinks, huh? Big Hugs

Can someone share how they went about getting dual listed?
In my case, I would have to move to the center I choose outside of NYC, once I was accepted. So, would I remain listed in NYC? It is not like I would get a cadaveric liver in NYC at the same time as the out of state center.

I don't get it. And, I had working relationships with many transplant surgeons and hepatologists. Do I jut tell them I am skipping town because the wait times in NYC are too long? I feel badly about that.

Susan

I forgot to add...If you are dual listed...you would be listed in NY, and also another place outside your region. So yes, listed at both transplant centers at the same time.

My meld was 15 a month ago. Since then, the ascites is worse, the encephalopathy is worse, the digestive issues are worse, the fatigue is worse. So, I am trying to understand how living donor vs multiple center listing will work.

I cannot imagine taking the chance of getting sick enough to get a cadaveric liver in NYC. I don't want to put my body or my kids and loved ones through the trauma of waiting until I was sick enough to get to the top of the list in NYC.

So, literally, what meld might I have before listing somewhere other than NYC? I just want to have a clue about the whole thing.

The more I know, the better I feel - even as I know that any plans can go awry when it comes to my sickly liver.

Thank you for your help. i meet with the transplant coordinator this week. I just want to have a better understanding of the whole kit and caboodle before I go in there. I'd like as few surprises as possible, and a list of questions prepared before I get there.

Thanks again.

I don't know anyone that had a living donor on this forum since I have been here. I have not read of anyone in older threads either. Many caregivers have offered, but it is not as easy as Kidney donation. Kidneys are pretty common for living donor, but livers are less so, as you know.

You probably can find some other transplant center to dual list with. But, until you are at the top of the list in that center, you won't get that call. You need a much higher MELD than mid-teens.

You would need to do whatever is required for both centers. Most people don't get concerned with dual listing until they hit the MELD 20ish, unless they have HCC. HCC will bump them to MELD 22, even if a natural MELD is only 11. Your worsening symptoms are not those that get bonus points. I really understand the frustration of waiting, being sick, but not sick enough to get transplanted. There are so many in your shoes.

You do know some people never get sick enough to need a transplant....or should I say, never get a high enough MELD to qualify under the guidelines, due to donor shortage.

You should speak with your TC about dual listing. The problem I see for your situation is you have been in the low MELD scores for 20 years and what they consider stable. Is this common with Sjogren's?

I know you must be so sick of being sick and tired. Big Hugs