RE: Lets try again- rollercoaster disease

[Guest guest]

Maggie,

I can't help you with the cyst question,

but I had my gallbladder removed three years ago because of sludge. I was also

told then that removing the gallbladder could complicate the Tx somewhat

because of scar tissue. It was considered a risk worth taking since I was (and

am, I hope) nowhere near a transplant yet, and the doctors didn't want the

sludge in the gallbladder traveling from the gallbladder to the common bile

duct and clogging it up. In 's case I think it would be indeed better to

wait for his Tx and then do it all in one go. I am no doctor of course, but it

makes sense to me.

Regards,

Chaim

From: [mailto: ] On Behalf Of Maggie Roussel

Sent: Thursday, March 26, 2009

02:38

To:

Subject: Lets try

again- rollercoaster disease

Hi Everyone,

Sorry about that my computer is doing strange

things. I joined this group in 2003 when my husband was diagnosed with PSC.

I've just been reading all the post for the past 6 years. My husband was

diagnosed after he was admitted to the hospital for a seizure, which he has

no history of. He had blood clots in both legs,arms and in his head.He had a

serious antithrombin III deficiency. It wasn't until a yr later that they

discovered and diagnosed him with PSC. The doctors are all fascinated with

his case bc they say this only happens to 1% of people with PSC and it

usually happens at the endstage of the disease. He has been pretty much

symptom free for 6 yrs, other than the occasional cholangitis

" attacks " (jaundice, dark urine, gray colored bms and pain in

urq) every two yrs. that last for about 2 wks. 2 yrs ago his doctor the

famous Dr.Regenstein (thats what all the doctors in New Orleans call him)

with Tulane Hospital said that looked horrible ,after he did an

ERCP,and said that he would have to get on the transplant list. Well all the

sudden got better. 2 months ago he started with symptoms again. Dr said

needed to get on the list. So, we went thru all the testing, 's

INR was 11 so they wouldn't let us leave the hospital bc they thought he

might be bleeding internally ( is on coumadin). His score at that time

was a 28. Regenstein wanted to see a neurologist before they put him on

the list (because of him having had a blood colt in the head) and also we had

to wait for approval from the Ins. Co. Everything took about 2 wks to get

going so of course had to retake labs for tx list and what do think

happened. His score is now a 17! so now we go from being told he would be

transplanted possibly in a wk but no longer than 6 wks, to could be a year!

what a rollercoaster! We had gotten mentally prepared for this and now it's a

waiting game. When they did the testing they discovered that his gallbladder

was filled with sludge and enlarged, along with the spleen being slightly

enlarged. they also found what they think is a complex cyst within the liver.

They said they cannot remove the gallbladder bc it would complicate the TX.

They haven't really said anything about the complex cyst in the liver other

than they will check it agin in 6 months if he hsa not been TXed yet. Well I

think thats all 's history, Just wondering if this rollercoaster is

normal and should we be worried about the possible cyst and the gallbladder

problem? Thanks to everyone who actually read this entire email, That's what

happens when you keep quite for 6 yrs.

Thank you,

Maggie, wife of UC 1987, PSC 2003

Mom to and