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Are there any other pre-liver transplant caregivers out there?
Transplants | Last Active: Jul 29, 2018 | Replies (195)Comment receiving replies
My husband was just diagnosed and we are still trying to process everything. So glad I found this site. Im sorry if I am barging in on someone else's post but I have questions along the same lines and honestly don't know how to start my own question. We were referred to a GI who promptly told us my husband needed a transplant. He was very blunt. My husband had not drank for several weeks even before his diagnosis. We he told the doc that he was never drinking again the comment from his GI was "that's what they all say". Then after telling us he needed a transplant, he further stated that there were no transplant centers in our area. I know this guy has a tough job but we were left reeling with no idea where to get any of our questions answered. He did say that my husband would have to be alcohol free for six months and that he would need to have letters of recommendation and show that he had a good support system before he would be "listed" and that's kind of how it was left. We've be researching online and I found this site. So, first question is how to we begin this journey and do we have to wait six months before even beginning the process. We have each other as a support system, but both are from very small families. He was an only child, I have one daughter, one brother and that's about it. Will that hurt is chances of getting "listed"? The doc also said that the window is closing for him to have a transplant since he is 62 and doc said they don't like to do them after around 68 or so. I noticed the poster above said they have to live closer to the transplant center. How do you pick a center? We live in Pensacola FL, 7 hours from Mayo in Jacksonville. Closer centers are in BHM 5 hours away and Oschner in NOLA 4 hours away. How do you choose or does someone do that for us. We have BCBS Federal so our coverage is worldwide. Sorry for so many questions. I have tons more but don't want to totally highjack the originally poster's blog. We just literally don't know how to get started or when. Thanks so much for any information!
Replies to "My husband was just diagnosed and we are still trying to process everything. So glad I..."
@gaylea1, @contentandwell,
I want to add another dimension to your interesting conversation by sharing this additional resource about MELD scores.
https://connect.mayoclinic.org/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/
Rosemary
@rosemarya Thanks for the refresher, Rosemary. This was also posted in November at which point I did respond to it. I still have never found out if the transplant center does have some discretion in choosing who gets an available liver. For instance if the MELD has not yet been recalculated but they know the patient has gone downhill, are they able to choose that patient over someone else?
Following are my comments that I posted in November about this article:
Interesting article.
Another component of who gets the next liver is Blood Type of course. Being a B was in my favor.
I thought the doctors basically had to abide by the list, what type of input/discretion are they allowed? I was never told I was near the top of the list, at 28 in Boston I was under the impresssion it would be at least a couple of more months. My husband thinks I got it sooner because I worked hard at getting in better shape and losing weight so I was a promising candidate, and would do well after a transplant, which I did.
I think if I thought I was near the top of the list I would have been nervous. As it was, the call was a huge suprise and we took off for Boston, perfectly calm! No time to be nervous. It seems so long ago in some ways and just like yesterday in others. I feel so extremely fortunate.
The other thing I wonder about now is just how often do they recalculate the MELD?
I mentioned in November that a cousin of my new son-in-law was one of the people who created the MELD score system. I had hoped to speak to him at my daughter's wedding but never did get around to it.
JK
@gaylea1 Things of course may be totally different in Canada, they may not even use the MELD score. The MELD really is a good way to know where you stand though, without it I don't know how you would know.
JK
Just a general question about muscle spasms. I am suffering severe cramping in my hands, feet, sides, ribs and calves. I have tried icing to no avail. I am one year on the wait list now for a liver transplant. What should i be doing?
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Hi I am actually in London Ontario Canada and my transplant team is at the University Hospital. I don't have to worry about costs as they are all covered by OHIP here. I am interested in your idea of my MELD score moving up. I will have to check that out. Thank you.