Update regarding my husband, Kelley , dx 2004

[Guest guest]

I visit this support group site daily. However,I seldom post anything.

So much has been going on regarding my husband's PSC issues, that I

find it too much to share.

The VA in Little Rock has been treating my husband for PSC. He has had

bile duct stents, heart stents, varicies bandings,Ercps, Mrcps, Egds,

a TIPS procedure in 2006 and just last week another severe esophageal

bleed and TIPS revision. He runs fevers off and on and has several

pneunmonia episodes.

We are listed at University of Arkansas Liver Transplant Med Center

with a MELD score of 17..

What I wanted to share with this group is simply that this center (UAMS)

is in complete chaos.

The hepatologist, Dr Rose, is young and arrogant. He says to my

husband, " See ya when you are a MELD 20 and maybe we will transplant

you, otherwise, sorry but your liver is bad and you are going to DIE! " .

The transplant clinic personnel also seem messed up. There have been

3 different coordinators in the last 11 months.

I want my husband to stay listed at UAMS because the surgeon, Dr WUU,

is the best there is..but this pre care system they have going is

pitiful. I am not going to give up and my husband has definitely not

given up.

Laurie

[Guest guest]

Laurie, your husband's center sounds like you need to bail out

ASAP!!!! The comments by the doctor are totally unprofessional and

truly uncalled for considering the gravity of your husband's disease

course. Is it possible for you to find another center? No one should

have to put up with the level of rudeness that is being doled out at

your center. When I read your post, I could not help but vent for

you. I am not as bad off as your husband but I have been through 4

hepatologists in a matter of 1.5 years at the center where I am in

Houston; even the director of the center is jumping ship. I cannot

tell you about the number of times that I wish that I could just move

to another part of the counrty where there is some stability with the

whole liver disease treatment spectrum. Know that you are not alone in

all of this and I will pray that you both find the right help soon.

Deb,

UC 1993, PSC 2005, colectomy 2005, CKD 2007, one fat and happy golden

retriever