RE: Cinda - Re: Liver Function Tests

[Guest guest]

Cinda,

I originally went to the Doctor (way back

when) because nothing I tried was working on a horrendous case of itching. They

initially diagnosed it as Viral Hepatitis, then changed that to Primary Biliary Cirrhosis, then figured out when they operated to

remove my gallbladder(which was so diseased it was calcified) that it was PSC

(their first clue was that below the gallbladder, the CBD was a rod instead of

a tube). A couple of months later they went back in and did a Roux-en-Y to

connect what was left of the CBD to the jejeunum –

pretty much the same procedure you went through. That stabilized me for a

while, and then my condition started deteriorating again, with the itching

returning, ascites, jaundice, fatigue – you name

the symptom, I had it – until I eventually was hospitalized for the

second major variceal bleed within six months, and I

was listed and almost immediately transplanted. Although they had harvested the

liver with the gallbladder, they didn’t transplant it with the liver…instead

they reworked the roux-en-y. The time between diagnosis and transplant was a

little over 4 years.

For the next 17 years my liver and I got

along fine, until I suddenly became ill at the end of last summer, winding up

in the ER and being told I had recurrent PSC which will require retransplantation. I’m now back in the same shape I

was in 17 years ago, except that the medical therapy is a little better at

controlling most of the symptoms most of time.

As far as I know, a roux-en-y will prevent

stenting via ERCP in most cases because there’s

too much risk of perforating the jejeumum. Stenting can

sometimes be accomplished at the same time as a Percutaneous

Transhepatic Cholangiography.

I think a few of our members have had relief of symptomsby

this method.

Steve

Rahn

L Tx 9/6 & 9/8 '85. (Wash. U-STL)

Waiting for Re- Tx (U of Iowa)

" Most

men lead lives of quiet

desperation

and go to the grave

with the song still in them "

(Thoreau)

Re: Liver

Function Tests

Carolyn,

The article

was great. Thanks. I was dx in 95 for Autoimmune

Hepatitis,

then PSC in 10/2001. About several months before 10/2001 I

started to

itch, then I turned yellow and when they did an ERCP, all

hell broke

out and I ended up having an emergency 5 hour roux en y

hepaticojejunostomy,

as well as they took out the gallbadder. When I

turned

yellow, the drs had thought I had a stuck gallstone. They

initially

told me the itching shouldn't be from my liver because my

bilirubin

was normal. I had been tracking a lot of the liver test

results for

the AIH but never quite understood them. I have to admit,

I've had

nowhere near the problems that you see on this posting. I've

been great

for the past year - I think I'm starting to itch again

though.

I keep telling myself it's dry skin, but I'm guessing it is

more than

that. I know everyone's progression is different but does

the itching

come and go? Last time I started to itch, it was about 4-

5 months

later I ended up diagnosed with PSC, severe blockage that

they ended

up operating. I'm not sure if it goes the rate it did last

time,

whether there is anything left to unblock and reroute.

Can you get

stents if you have already had a roux-en y?

Interested

in anyone's rate of progression.

Cinda

[Guest guest]

Cinda,

Recurrence of PSC is a controversial

topic. The reports vary widely on the rate of incidence (anywhere from 5% to

25%) and the mean time post Tx

at which PSC recurs (from 5 to 15 years).

The truth is, none of the studies have been on very

large pools of patients. In addition, it appears to me that so much is still

unknown about PSC that it would be extremely difficult to distinguish between

recurrent PSC and the onset of PSC in the transplanted liver. Although they

have not yet found out how to prevent PSC, at least they now have medical and

surgical therapies to control most of the symptoms, and the ultimate therapy of

the liver transplant. When I was originally diagnosed, PSC was defined as ¡Èan

uncommon disease of unknown origin¡Äuniversally fatal in 2 to 3 years¡É, and my

GI dismissed reports about the work of Dr. Tom Starzl

with ¡ÈThere¡Çs even this guy in Colorado who says he can transplant the liver.¡É

I didn¡Çt experience the itching again for 3

years after the R-N-Y. About that

time, I started seeing the GI¡Çs at Washington U, which didn¡Çt have a liver

transplant program at the time. They initially thought that I was 2 to 3 years

away from needing a transplant, but then I had a severe episode of bleeding and

they revised that to 6 months, which turned out to be pretty accurate. At the

time of the second bleeding episode Wash U had just started the L Tx program. They didn¡Çt think they would be able to stop

the bleeding if I had a third episode, so I was listed almost before I was

moved from the ER to the Floor, and the next day I became the second L Tx recipient in

their program. Have you told your Hep about the

return of the itching? It¡Çs quite possible that the R-N-Y is partially blocked,

or that you have ¡Èsmall duct¡É PSC.

You¡Çre right, there¡Çs not a whole lot you

can do besides treat the treatable symptoms, but your family will probably

continue to find that difficult to accept. You may have talked about this

before and I missed it, but where are you located, and who is your Hep?

Yes, variceal

bleeding is a type of internal hemorrhage. A common complication of liver

disease is portal hypertension – increased pressure in the portal hepatic vein because

of reduced flow through the liver. This can result in the formation of varices, which are veins that are unsupported by muscle

tissue, becoming enlarged. Varices are most likely to

appear in the esophagus, and can start to bleed spontaneously or as the result

of injury from something you eat.

I would have expected that your Hep would have you on a shorter interval for LFT¡Çs, but it certainly sounds like you need to have a new

set done, especially if your itching is combined with any other symptoms, like

fatigue or jaundice. BTW, I learned early on that it¡Çs important to have a copy

of everything that goes in your case file, including Labs. My Hep now makes sure that I¡Çm CC:¡Çed on everything, and usually prints a copy of my

labs for me before I leave the Clinic. I track my Labs on a spreadsheet .

Steve

Rahn

L Tx 9/6 & 9/8 '85. (Wash. U-STL)

Waiting for Re- Tx (U of Iowa)

" Most

men lead lives of quiet

desperation

and go to the grave

with the song still in them "

(Thoreau)

Re: Liver Function

Tests

>

> Carolyn,

> The article was great. Thanks. I was dx in 95

for Autoimmune

> Hepatitis, then PSC in 10/2001. About several

months before 10/2001

I

> started to itch, then I turned yellow and

when they did an ERCP,

all

> hell broke out and I ended up having an

emergency 5 hour roux en y

> hepaticojejunostomy, as well as they took out

the gallbadder. When

I

> turned yellow, the drs had thought I had a

stuck gallstone. They

> initially told me the itching shouldn't be

from my liver because my

> bilirubin was normal. I had been tracking a

lot of the liver test

> results for the AIH but never quite

understood them. I have to

admit,

> I've had nowhere near the problems that you

see on this posting.

I've

> been great for the past year - I think I'm

starting to itch again

> though. I keep telling myself it's dry

skin, but I'm guessing it

is

> more than that. I know everyone's progression

is different but does

> the itching come and go? Last time I started

to itch, it was about

4-

> 5 months later I ended up diagnosed with PSC,

severe blockage that

> they ended up operating. I'm not sure if it

goes the rate it did

last

> time, whether there is anything left to

unblock and reroute.

>

> Can you get stents if you have already had a

roux-en y?

>

> Interested in anyone's rate of progression.

> Cinda