Pre-transplant/transplant MELD score

Themister had his MRI and labs this week. He has been on the transplant list since July 2013....and had not moved much in any direction until this visit. He is ticking upward with MELD.

In October, themister was well enough we asked the tx coordinator if he felt we could go out of state to a family wedding. It was only 3 days, but a lot can go wrong in 3 days with my husband. We were given the go ahead, and the best tx coordinators in the world thought it was a "good time" to do that now his HE was controlled more, nothing crazy happening, and themister was "stable".

We got over excited about this new found freedom to travel...decided to plan a trip to visit our home town after the holiday's. We won't be doing that now.

Themister has been more ill. Looks old. Is tired. Small cuts and scratches bleed and won't stop easily. He sleeps an hour or two longer each day. No longer wants to walk the dog. Everything is a huge effort. Forgets everything. Not HE forgetting, this is something different, but HE peeks in too regularly. More jaundiced. Not functioning on his old, normal, "stable" level.

He told me he thought his MELD would be higher because he felt different and knew something was worse. He knew he was not as well as he had been. And he was right. MELD is 18, MELD-Na 20. First time out of low-mid teens.

The tx folks will now pull labs in 3.5 weeks, not 90 days from now. We were asked how long it takes to get to the tx center. The whole conversation was different. More about distance, timing, and being available. We will be.

Then there is this thought...because we are all about saving his life right now. And this changes everything. We knew when he hit 20, we would decide about this one thing. Mayo AZ offers at 28. We want to have his tx where he lives, where we are comfortable, where everything would be easier. Who doesn't? But, but, but. Themister has type "0", which is usually a longer wait. We decided we will wait for the next lab, yet there is a thought about dual listing now. Some tx centers are pumping out 175 tx a year, transplanting at MELD's that are lower. Close to the MELD he is at now. Can we afford it? Is it worth it? Will he survive to get to the top here in AZ?

Is 28 that much higher than 22, in this process? Risks, rewards??? Any thoughts, boardies? Big Hugs

His MRI was Wed, and they saw no cancer. But like your situation, I have heard of the post tx find of other things not showing up in tests. TIPS is great, kidneys good. INR was the thing that moved MELD. The hep/surgeon spoke to us and asked a lot of questions about things that may have explained the higher MELD suddenly. Nothing did. Last anti-biotics were in Sept 2013. Nothing changed in diet.

They did talk "transplant talk", but we knew this MELD is not "normal" for themister . He has been stuck on stable two years now. 13-14 avg. Hep asked how long it would take to get there if they called. That type of thing. We got a letter today about updating them if caregiver changes, phone changes, that letter. This all feels different, David.

Susan, I think you are doing everything you can to LIVE. I am so in awe of being SICK and driving this effort for yourself. I cannot imaging Mike putting forth this effort. He crumbled and without a "sidekick" (me) he would have been doomed. I am amazed and encourage you to keep up the FIGHT. Go get em....

themiz, you are like me...helping another through this truly HORRIBLE time. My heart goes out to you both.

Hugs,

Mama Lama

Susan...do you know at what MELD each center offer's? I may phone around and chat with some of them. But would love to know anything you found/find. Big Hugs

Oschner - 68%% of transplants are done at MELD 18 or under. 18% are done at 19 or above.

Vanderbilt - 57% are done at 18 or under. 27% are done at 19 or above.

Mayo Jacksonville - 19% are done at 18 or under. 39% are done at 19 or above.

I don't know why Oschner and Mayo don't add up to 100%...oh wait I think I made an error. But I know how to fix it. But I am too tired, as it is midnight, and I will only make more errors if I try now.

On the other hand, I will obsess about this post until I figure out the error. Sigh.
Schimbare.

A bit more info. I chose these three centers because my transplant hepatologist said that he had sent patients to these hospitals for dual listing. He did not say they were the best, or anything like that. He just said that our center had worked successfully with these three centers.


I got the data from www.otpn.transplant.hrsa.gov
I believe it was themiz who pointed me to this data source. Thanks, themiz!!


Comparison of percent of transplants done at MELD 25 or over.

Oschner - 4% of transplants are done at MELD 25 or over.

Vanderbilt - 3% of transplants are done at MELD 25 or over.

Mayo Jacksonville - 9% of transplants are done at MELD 25 or over.

My Center - 21% of transplants are done at MELD 25 or over.

So while I was dinking around with UNOS stats.....

themister got “the call”!!

At 7 last night, he was to rush to Mayo. Originally, he was told he was to be a back up, not to eat or drink, and to put x,y,z in a bag.

A few minutes later they called my cell phone and said the surgeon wanted him to come in.

At almost midnight, the surgeon came in to tell us they did not like the quality of the liver and there would be no surgery.

They said they will call us when they have another match for him. Unhooked him, and sent us on our way. We were so lucky I knew this can happen from reading others stories here. We both feel very prepared to go through this next time.

Boy, what a long night. Big Hugs

Soon...so thrilled for you both...thinking of you every minute.

Miz-good thoughts and prayers for you and the Mister.
Hugs,
Emma

Practice makes perfect? Get some sleep. Hugs ML

It won't be long now...

I cant hold my breath much longer....bet you guys are really anxious to get this GOING.

Hugs,

ML

I'm here...checking every hour or so. Best thoughts going out to AZ to themiz and themister that this has a happy outcome REALLY SOON. SO MANY HUGS, Mama Lama