Re: New to Group/Transplant Eval Question

October 1, 2004

Larry,

As the mother of a son who was just diagnosed in June, I'm wondering

why you are being evaluated for a transplant so soon. No one at Uof M

has even suggested this to us yet. What was your ALK and Bili? I'm

guessing that since your wife mentioned that you were jaundiced that

maybe your bili was real high. What did your ERCP show? Do you have any

symptoms other than jaundice?

I know from the others in this group that a transplant can be years

away or sooner than you thought and that there is no typical pattern to

follow.

I hope that your colonoscopy goes well. Know that now you have another

family here in this group that cares how you are doing.

Best wishes

Lee

> Hello all. I'm new to the group, diagnosed with PSC 9/04. My wife

> Nellie has posted our story in previous messages, so I won't go into

> too much detail, but basically here's my story: My family has high

> cholesterol, so I went to the doctor in January '04 to get checked

> out because I noticed xanthomas (cholesterol/fatty deposit plaques

> under my eyes), which are a sign of hypercholesterolemia. My

> cholesterol was sky high (306), so I changed my diet and started

> exercising, went back to my PCP in June, where he rechecked my lipid

> profile and my LFT's since he was thinking of putting me on a statin

> (like Zocor). Well, my cholesterol came down 40 points, but my

> LFT's were elevated. So, he referred me to a gastroenterologist,

> and after an ultrasound, many blood tests, a liver biopsy and an

> ERCP, I was diagnosed with PSC. He put me on urso, and I'm in the

> process of getting my pre-transplant work done (colonoscopy and EGD

> next week) and will be going to the UAB transplant center on 10/20.

> I just wanted to get some feedback on other's experiences with

> transplant evaluation, what types of tests and procedures I should

> expect when I go to UAB, what types of providers I will meet with

> (other than the transplant surgeons), and any advice on anything to

> help make it easier (I haven't spoken with the transplant

> coordinator yet - she's calling me next week). Also, should I have

> my parents (who are very very supportive) come with my wife and I tp

> UAB? Would that help in terms of a more positive evaluation?

>

> On another note, I am a physician completing my training at the

> Public Health and Preventive Medicine Residency at the Morehouse

> School of Medicine in Atlanta. I hope to get a spot in an

> epidemiology fellowship at the CDC when I finish my training next

> summer. If anyone has any medical questions or needs any

> clarification on test results or help in locating research or

> information, please don't hesitate to ask me. It's definitely been

> a transition going from the provider side to the patient side, but

> with the support of my friends, family, and now you guys, I think

> that the roller coaster of emotion from this will be a bit less

> scary. My GI doc has been very postive so far, says my liver's

> synthetic function is still pretty good, and is seems to feel that

> things are going to be OK. I hope he's right...

>

> Larry Cohen

> PSC: dx 9/04

>

October 1, 2004

Lee (and anyone else following this thread)-

My GI doc said that he did not think that I was in immediate need for

a new liver, but wanted me to go ahead and get in the system at UAB,

so when the time does come, the process is much smoother. I think one

reason he wants me to be evaluated is that my biopsy showed some

cirrhosis. As far as symptoms, I have some jaundice in the eyes, and

I do have the occasional fatigue and a bit of nausea, and maybe two or

three times a year I have stomach pains (this is from thinking back

over the past few years when I probably had PSC but just didn't know

it). My ERCP basically showed narrowing of my bile ducts. As far as

my most recent lab work:

Total Bili 3.3

Alk Phos 652

AST 110

ALT 91

How does this compare to others in the group?

Thanks for the support. It really makes me feel better that I've got

another network of support, and that I can be there for others as well.

larry

>

> > Hello all. I'm new to the group, diagnosed with PSC 9/04. My wife

> > Nellie has posted our story in previous messages, so I won't go into

> > too much detail, but basically here's my story: My family has high

> > cholesterol, so I went to the doctor in January '04 to get checked

> > out because I noticed xanthomas (cholesterol/fatty deposit plaques

> > under my eyes), which are a sign of hypercholesterolemia. My

> > cholesterol was sky high (306), so I changed my diet and started

> > exercising, went back to my PCP in June, where he rechecked my lipid

> > profile and my LFT's since he was thinking of putting me on a statin

> > (like Zocor). Well, my cholesterol came down 40 points, but my

> > LFT's were elevated. So, he referred me to a gastroenterologist,

> > and after an ultrasound, many blood tests, a liver biopsy and an

> > ERCP, I was diagnosed with PSC. He put me on urso, and I'm in the

> > process of getting my pre-transplant work done (colonoscopy and EGD

> > next week) and will be going to the UAB transplant center on 10/20.

> > I just wanted to get some feedback on other's experiences with

> > transplant evaluation, what types of tests and procedures I should

> > expect when I go to UAB, what types of providers I will meet with

> > (other than the transplant surgeons), and any advice on anything to

> > help make it easier (I haven't spoken with the transplant

> > coordinator yet - she's calling me next week). Also, should I have

> > my parents (who are very very supportive) come with my wife and I tp

> > UAB? Would that help in terms of a more positive evaluation?

> >

> > On another note, I am a physician completing my training at the

> > Public Health and Preventive Medicine Residency at the Morehouse

> > School of Medicine in Atlanta. I hope to get a spot in an

> > epidemiology fellowship at the CDC when I finish my training next

> > summer. If anyone has any medical questions or needs any

> > clarification on test results or help in locating research or

> > information, please don't hesitate to ask me. It's definitely been

> > a transition going from the provider side to the patient side, but

> > with the support of my friends, family, and now you guys, I think

> > that the roller coaster of emotion from this will be a bit less

> > scary. My GI doc has been very postive so far, says my liver's

> > synthetic function is still pretty good, and is seems to feel that

> > things are going to be OK. I hope he's right...

> >

> > Larry Cohen

> > PSC: dx 9/04

> >

October 1, 2004

Lonnie, too, was advised to be on the pre-transplant list (visit with

the hepatologist as if he WERE on the list) soon after his arrival to

Indianapolis - around 1995. Since then, we have seen the

hepatologist at least once a year during the pre-transplant part of

the day. It was strange to do because we kept looking at everyone in

the waiting room and could quickly identify which of the " couple " was

in need of the transplant (jaundice, in a wheelchair - weak, on

oxygen). I'm sure they were all looking at us wondering why we were

there. It was good for us, because we knew more about the hospital

when the time came, which made the process much smoother.

Kathy

wife of Lonnie

dx PSC/UC '89

full colon removal 12/00

ltx 6/2/04

> Lee (and anyone else following this thread)-

> My GI doc said that he did not think that I was in immediate need

for a new liver, but wanted me to go ahead and get in the system at

UAB, so when the time does come, the process is much smoother.

October 3, 2004

Larry,

Welcome to the group, though sorry for the reason. Regarding your

parents going with you: during the staff social workers evaluation, which

carries lot of weight, the first, last and most important thing he will talk

about is your support system. Making sure that you have a 24/7 system in

place in case of need after tx. He will also cover your history of drug use

or drinking quite thoroughly, if applicable. Hope this helps. Tim L

New to Group/Transplant Eval Question