Being on transplant list with a low MELD, and has been for years, why?

January 11, 2007

I know this may sound silly, but honestly, financially, being on the

transplant list ends up being very costly for my wife and I. I was

diagnosed with PSC and UC in 1999, I am 29 now. My MELD is somewhere

around 10-11 if I recall correctly. It has been there, or maybe even

gone down a point at times, for about 6 years.

I'm in Austin, TX, so I have to go to Houston to the transplant center

there anywhere from every 6 months to a year, depending on how the

current case manager is feeling. I then also see a GI doc here in

Austin, so I double up on a fair amount of stuff. I have to due a lot

of double labs, and am doing them once a month. The time I've been

sick most in the past 8 years has been the one time I got an infection

from an ERCP and felt like they pushed me down a flight of stairs and

had to be hospitalized for a few days.

I've been on the list since about early 2001. I feel it's a

tremendous waste of time and money. I find myself not wanting to deal

with it when it comes to blood work and appointments in Houston,

because I'm so stable. Tie that in with companies inevitably changing

insurance every stupid year, company mergers, etc, some years I'll pay

my out of pocket deductibles 3 times for 3 different carriers.

So the question is, am I wrong for wanting to be taken off the list

until I start showing some changes? Is this a huge stamp on my file

if I were to request it, that I somehow don't care? I do care, but it

wasn't that hard for me to get on the list, and I'll be moving to NC

soon from TX, and don't really want to go through the whole

re-approval process all over again on top of all of this.

Any thoughts? Anyone else get put on prematurely, and then get taken

off, or wish you had?

Thanks guys/gals

Recommended Posts