Re: *Tom B.* - liver function tests, INR etc

[Guest guest]

Tom,

I got transplanted at town and I was listed there from 2001-

2005. My MELD, when we converted to that system, was only 11 and

stayed there for a while after. I stayed listed the whole time. Did

it mean I was likely to get a liver? No, but it meant that I had all

of the services that working with a transplant center afforded me.

There's something for being said for getting in there and working

with the " team " before you get especially sick. They can help with

the pre-tx health decisions so that your outcome afterwards is the

best it can be - particularly whether or not to do an ERCP and what

antibiotics to use if cholangitis is your main issue (as it was

mine).

When I finally did living donor, my MELD had been as high as 20. My

blood type is O, so I would still have had a wait in front of me if

I'd not had a donor. Just wanted you to know some of the pros of

getting listed earlier rather than later...

Thanks,

Deb in VA

[Guest guest]

-----Original Message----- On Behalf Of Deb in VA

it meant that I had all of the services that working with a transplant center

afforded me. There's something for being said for getting in there and working with

the " team " before you get especially sick.

I couldn’t agree more! Ken’s blood work

and ultra sounds were always done on a hit or miss time table. Now it’s done like clock work. Plus, we have the added benefit of

deciding where to have the testing done – local or at the transplant

center. Might not sound like such a

big deal, but…. Baylor found 3 aneurysms in Ken’s spleen that the local people missed. For us, being listed is really worth it.

Barb in Texas

[Guest guest]

town seems to have changed its tune somewhat, then, since your experience. I'm working with them myself, and they seem reluctant to list until the MELD goes way up.They are great at follow-up, though, even if you aren't listed. The commute is kind of a pain for me, but they want me down there every eight weeks for follow up tests, which I appreciate.Tom C , EA Consulting Group, Inc.2005 Loudoun County Service Business of the Year19440 Golf Vista Plaza Ste 240Leesburg, VA 20176 cell faxThis written advice is not intended or written to be used, and it cannot be used by a taxpayer, for the purpose of avoiding penalties that may be imposed on the taxpayer.

[Guest guest]

Tom,

That's good then - at least you're working with them prior. I don't

think I had enough experience with them prior to tx since I was

seeing Dr. Rustgi off-site. Once I transitioned to Dr. Shetty, I felt

like they were much more aware of where I stood and when things

needed to happen for me. (I have a feeling that Fairfax's program

going under may have something to do with the change in when they

list people - becoming the only center in the immediate area has an

impact, I'm sure...)

Anyway, best wishes to you. I know the wait is awful. Hang in there

and if you can, maybe think about multi-listing.

Take care,

Deb in VA

>

> They are great at follow-up, though, even if you aren't listed.

The commute is kind of a pain for me, but they want me down there

every eight weeks for follow up tests, which I appreciate.

>

> Tom

>