Re: Normal LFTs as a sign of progress?

[Guest guest]

Hi ;

Please give Fred my congratulations on his normal LFT's; and my envy

for being retired! I hope that Fred's low calcium has resolved and

that your Gilbert's syndrome is under control. Just tell Fred that

the one with the lowest bilirubin has to make breakfast!

Happy holidays to you both,

Best regards,

(father of (19; PSC 07/03; UC 08/03)

[Guest guest]

-since there are not that many people that have psc i am really

surprised that your husband's doctor treats that many patients who

have it. when i am at the hospital in southern california the interns

want to come and have a peek at me, because they have never seen

anyone with psc in real life. one student even asked if she could

come in and watch my ercp. what city do you live in that has a

prevalence of psc??

[Guest guest]

Hi Dave-

Thanks for your good wishes. I would never have known I had Gilbert's

Syndrome except for the lab test. (Although I do itch a lot, but I

doubt that has anything to do with slightly elevated bilirubin and

more to do with estrogen depletion, from what I've read!) All is well

with both of us.

And Fred has to make breakfast - his bilirubin is, and always has

been, NORMAL. He had one minor gum and lip tingling episode re: low

calcium, but no real complaints. Hope your son is doing well, Dave!

Warmly, (or actually, Coldly - it's in the teens in ATLANTA!)

> Hi ;

>

> Please give Fred my congratulations on his normal LFT's; and my

envy

> for being retired! I hope that Fred's low calcium has resolved and

> that your Gilbert's syndrome is under control. Just tell Fred that

> the one with the lowest bilirubin has to make breakfast!

>

> Happy holidays to you both,

>

> Best regards,

>

> (father of (19; PSC 07/03; UC 08/03)

[Guest guest]

Hi Pam-

I think the doctor was estimating his number of PSC patients. I

seriously doubt he has that many active patients. Although he's

widely known as the best liver doctor in the state of Georgia, so I

guess it's possible. His name is Norman Gitlin, and his specialty is

hepatitis C, for which he's written numerous papers on. We live in

Atlanta.

Wife of Fred, PSC 3/04

> -since there are not that many people that have psc i am really

> surprised that your husband's doctor treats that many patients who

> have it. when i am at the hospital in southern california the

interns

> want to come and have a peek at me, because they have never seen

> anyone with psc in real life. one student even asked if she could

> come in and watch my ercp. what city do you live in that has a

> prevalence of psc??

[Guest guest]

The practice I see (MN Gastroenterology) is familiar with PSC, has contacts

with both Mayo and U of Minn transplant programs. I don't know how many PSC

patients they have, but I was immediately sent to Dr. (their

PSC specialist) for followup after diagnosis. As it turns out, he had just

had dinner with the specialist I saw at Mayo.

Mayo (Rochester) is also very familiar with PSC. St. s (Mayo,

Rochester) is a teaching hospital - they were far more interested in seeing

a jaundiced adult than a PSC patient. One of the Drs. brought along a

gaggle of students and spent 10 minutes going over the causes of jaundice

(and some conditions that mimic jaundice). He was an east Indian and had a

very different outlook compared to the others - quite interesting.

Arne

53 - UC 9/77 - PSC 4/00

Alive and (mostly) well in Minnesota

-----Original Message-----

From: pam

-since there are not that many people that have psc i am really surprised

that your husband's doctor treats that many patients who have it. when i am

at the hospital in southern california the interns want to come and have a

peek at me, because they have never seen anyone with psc in real life. one

student even asked if she could come in and watch my ercp. what city do you

live in that has a prevalence of psc??

[Guest guest]

,

My LFTs have been not normal, but at least under control since going

on the Urso about four years ago now. However, I still have an annual

colonoscopy and CT (the colonoscopy checking for any form of IBS and

the CT for biliary cancer) and I see my hepatologist quarterly. I was

also asymptomatic until having a brutal cholangitis attack in

September which subsequently landed me on the transplant list here at

University Hospital in Madison.

I'd be the last one to call my medical team on the carpet for having a

cavalier attitude about my health, because I trust them completely.

However, the simple fact that this disease does progress differently

in all of us is reason enough to be diligent. I will readily admit to

being lax about my meds and my general health prior to this fall, but

spending a month out of commission cured me of that.

Best holiday wishes to you and Fred both.

Skol,

Bill

PSC '00, Listed Tx 11/04, Orneriness 1/5/68 ;-)