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Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful. My work has me out of Phoenix at the time which is a blessing as it has me next to Mayo. What I have learned in the past year since being diagnosed:
1. Mayo Hospital is the leader on Transplants
2. California has a longer wait for livers. As they only will do low-risk transplants.
3. Mayo is very strict when it comes to following the rules for patients.
4. Mayo has many classes that you have to go through, complete and pass.
5. The Meld score is how you are evaluated for a transplant (Mine is 26).
6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
7. They will not accept a paid care giver source and prefer a family member. They also need to go through a care giver class.
8. The post prescriptions can run thousands each month.
Best Wishes to you!
Dave
Replies to "Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful...."
@contentandwell This is a very good point. Thankfully SRTR has a risk-adjustment model that takes into account donor and recipient characteristics. When looking at SRTR graft or patient survival outcomes it’s important to look at the percentage that is listed for, “Expected probability of surviving…” which will say, “(adjusted for patient and donor characteristics)” beneath it. This means that the percentage takes into account the unique characteristics of that center’s transplant patients. For example, Mayo Clinic often takes on high-risk cases that other centers turn away and this is accounted for in SRTR’s expected probability percentages but is not accounted for in SRTR’s estimated probability percentages.
We know this can be a bit confusing so in our recent blog post on" Using the Scientific Registry of Transplant Recipients" we walk through a specific example of this from one of our campuses, if you are interested take a look at #5 in the post: https://connect.mayoclinic.org/newsfeed-post/transplant-resource-using-the-scientific-registry-of-transplant-recipients/
@NatalieR, Thank you for the explanation. This does get confusing. Rosemary
My MELD score is now 23 and I am told not to worry about the score. I am number 4 on the O type blood list and am told to expect a liver within one to six months. Good Luck to you.
@davebarnes
Thanks for the regular updates - always good to hear about your progress!
Teresa
@davebarnes Dave, that sounds very positive. That is a low MELD for them to tell you to expect a live so soon. May I ask where your transplant center is?
I am just so thankful that I got mine sooner than anticipated because I had suddenly started going downhill fast.
JK
Good morning JK. I am in Phoenix going through Mayo. I was told my MELD score was right in the middle. However being a large man (6,4") and having a common blood type my chances of a quick transplant are quicker. I have been feeling downhill for well over a year now.
@davebarnes Dave, you surely are in good hands at Mayo. I am curious though, are you anticipating a live donor from an unknown donor or from someone you know? I believe most living donors are family or friends of the person needing a transplant but it sounds as if there may be donors there who just do this out of a tremendous sense of giving, which is great. I can understand why having a common blood type helps in the living donor situation.
I hope this all comes through for you. I know how it is to feel pretty well and then to have things go downhill. I was very fortunate in not feeling that unwell until fairly close to when my transplant came through.
JK
I am not receiving a liver from a living donor (at least not family). My health and energy are greatly reduced. However, I have to maintain my job and daily functions so I can keep my insurance.
Thanks JK.
Dave
@davebarnes Sorry, Dave, I guess I misread your post. I was fortunate also in being blood type B, I am sure that helped in my getting a transplant when I did, sooner than anticipated. I had spoken to Mayo in Rochester and they felt that I could definitely get one at MELD 28 with my blood type so I was preparing to dual list there when a liver came through for me. "Hank" (a neutral gender name for my live) and I get along great so far -- so far, so good.
JK
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@davebarnes @tlopez
I found Dave's post interesting:
2. California has a longer wait for livers. As they only will do low-risk transplants.
I think the fact that some places only do low risk causes the SRTR stats to be a bit unreliable because if a center only does low risk it
will of course appear to have better outcomes vs a transplant center that takes higher risk candidates. I used MGH and they are
fabulous but do not look as good as some others on that database.
6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
Hmm, I do not recall that being a requirement at MGH. Maybe it was discussed initially though and I just forgot.
8. The post prescriptions can run thousands each month.
Really? I am very fortunate in that we pay very little, thankfully, and I was not aware that they were so expensive. The only
pharmaceutical that has been that costly for me was xifaxan, prior to transplant.
Good info, Dave. I would have loved to double list in southern CA since my son lives there but when I found out that the wait there was worse than Boston I did not bother. If I had double listed it would have been at Mayo, they were very encouraging.
JK