Pre-transplant/transplant MELD score

(((((Themister)))))

I was so excited I woke Mike up to tell him the latest!

Keep us posted when you can.

ML

You might be tired, but we are not tired of hearing about your waiting. It will happen soon. The perfect one will show up :)

The Mister im so glad you were feeling well enough to post. And I hope and Pray your day will come soon and you will get your transplant. Bless you and the Miz
Hugs
Dorothy

Thought I better update. My emotions have been too raw to post about themister.

It has now been 3 weeks since themister's 5th transplant call. He got the first call on Jan 16th. I have not wanted to talk about it. I am doing some strange avoidance thing. I am angry.

This last time was the 2nd offer of a DCD live. He accepted...told not to eat or drink and wait for the next call, which came within an hour.

Again, the organ was no good.

I have been pretty fragile since this last call, and I feel selfish. I am not the sick one. What the heck is wrong with me?

Themister has decided "it may never happen". Since the last call, he said something is not fitting for him, afraid he will have one of those crisis that knocks people off the list. Is that a rational fear? I don't know. I just don't know. Limbo is an awful place to be.

In November 2012, themister was told he needed a liver transplant. Then once we were moved two states away to be near the transplant center...he needed to get more sick.

More sick than dying?

The reality is, there are NO healthy people on the transplant list. I know my husband is terminally ill and will die without a transplant. Every morning, that thought slams me in the gut.

I have a feeling themister holds the record for the most calls with no transplant. Thanks for being there for us. We need you. Big Hugs

Were you on the transplant list 4 years, David?

Themister has been "disabled and sick" since his first gastric bleed. That was March 2010. He was not 100% since 2005, though.

He is sick enough. Fear that he will get too sick, or die of a sudden crisis. We are both educated on what can happen at this point. Hope is elusive. Sorry to be gloomy. Big Hugs

themiz,
It was 4 years on the list, but I never thought about getting a liver. They never told me where I was on the list and I was under the impression that I wouldn't truly be on the list until my MELD was over 25. I was told that I was "in the pipeline," for those 4 years. Not knowing where I stood was easier than thinking about what if.

You and themister will get there. As arneeb said, "Quit overthinking this." I know there's a liver coming your way.

The spot themizter is in is shared by many. Sick, but not sick enough to be transplanted...yet.

Still they call him, and so he continues to have a chance at a transplant.

The American Liver Foundation posted some statistics in January of this year suggesting approximately 17,000 adults and children have been approved for transplant in the US. Over 6,000 are transplanted successfully annually, and that number is growing every year, with more organs available. (Most here know I think the system should be an opt out system, with everyone an organ donor who has not submitted religious, ethical, or medical reasons to be excused/rejected).

And approximately 1,500 die each year on lists who are so ill they die waiting. So 80% of those near death are saved in time. Not enough.

This period was awful at our house...and I know themiz and themizter are struggling.

I pray an organ is found for him soon so they can get on with their life.

Hugs,

Mama Lama

Miz,

The waiting to get sicker but not too sick is the bane of so many of us here. When I tell friends what point I am at in the transplant process, they are incredulous that this sort of ****ed up system makes us get sicker and sicker by the numbers - while virtually ignoring quality of life, wait time, or other legitimate aspects that add up to the urgency a patient has for a new liver.

I have no good ideas as to how to maintain good spirits during the seemingly interminable waiting. I know that having you and the others here makes a huge difference in my ability to avoid falling into depression or despair. You Miz,are helping hundreds and thousands of people who read these posts. You are an example to all of us as to how best to endure this horror with grace.

xoxo
Schimbare

When I was sick, and spoke to Mayo in Jacksonville, they said a MELD score of 21 would be enough for a transplant. I thought that was too low. Stupid in hindsight, but thought I'd never get a transplant and wasn't sure of what to do. Now, I'm glad I waited and didn't move to Jacksonville.

The sad fact is that not enough people are donors and you don't receive a liver until you're almost dead. It has to be that way. It's only fair that the sickest people that are able to survive surgery, get the surgery. This sucks, but it's the system we're stuck with. We need more folks willing to donate their organs upon their demise. I hit the lottery with a week to go. It could have easily gone the other way.

I only hope that all of you potential transplants are as lucky as I was/am. Stay strong.