RE: Saw the hep dr today...

[Guest guest]

Anita,

How old are you? I'm 50. I was dx '01. But my gall bladder came out in '93.

After that the disease had to have been working on my liver by then. I had a few

hospitalizations, crazy liver numbers, too many specialists and no doctor

keeping track of eveything. I itched like a maniac for over two years, but I had

to turn yellow for dx to take place. I'd two failed ERCPs (ducts swelled shut)

and a liver biopsy in the middle years. I'd been dx with a non-viral hepatitis

which I thought was some kind of temporary inflammation. I figure my number

(transplant) is coming up in the near future. The doctors tell me not yet, but

we have to being thinking about it. I haven't had a full-blown cholangitis

episode for years. I get infections all over the place though.I have ambiguous

feelings about tx. I dread the anti-rejection med protocol and the doctors are

nervous about it too. I have so many bad side effects from so many drugs. the

list takes up 1/3 of the page written paragraph. Cheryl

Saw the hep dr today...

> She said that my theory might be right. I think I'm not getting really bad

> infections because the tube gives me enough drainage to keep things

> sub-clinical. At least that's my theory and I'm stickin' to it. After all

> this time I KNOW what an episode of cholangitis feels like, no matter what

> the blood tests say.

>

>

>

> I'd love it if I never had to have a liver transplant, but my liver won't

> heal. It's permanently damaged. If I don't have a transplant soon, they may

> decide that I'm too old to give me one. Also, my chances of

> cholangiocarcinoma are about 15%, and with our family history I don't want

> to take chances, you know?

>

>

>

> Anita

>

>

>

[Guest guest]

Anita,

How old are you? I'm 50. I was dx '01. But my gall bladder came out in '93.

After that the disease had to have been working on my liver by then. I had a few

hospitalizations, crazy liver numbers, too many specialists and no doctor

keeping track of eveything. I itched like a maniac for over two years, but I had

to turn yellow for dx to take place. I'd two failed ERCPs (ducts swelled shut)

and a liver biopsy in the middle years. I'd been dx with a non-viral hepatitis

which I thought was some kind of temporary inflammation. I figure my number

(transplant) is coming up in the near future. The doctors tell me not yet, but

we have to being thinking about it. I haven't had a full-blown cholangitis

episode for years. I get infections all over the place though.I have ambiguous

feelings about tx. I dread the anti-rejection med protocol and the doctors are

nervous about it too. I have so many bad side effects from so many drugs. the

list takes up 1/3 of the page written paragraph. Cheryl

Saw the hep dr today...

> She said that my theory might be right. I think I'm not getting really bad

> infections because the tube gives me enough drainage to keep things

> sub-clinical. At least that's my theory and I'm stickin' to it. After all

> this time I KNOW what an episode of cholangitis feels like, no matter what

> the blood tests say.

>

>

>

> I'd love it if I never had to have a liver transplant, but my liver won't

> heal. It's permanently damaged. If I don't have a transplant soon, they may

> decide that I'm too old to give me one. Also, my chances of

> cholangiocarcinoma are about 15%, and with our family history I don't want

> to take chances, you know?

>

>

>

> Anita

>

>

>

[Guest guest]

Hi Cheryl,

I’m 62. Started having elevated liver enzymes

about 12 years ago. Was mistakenly diagnosed with autoimmune hepatitis a few

years later. Started getting chills and fevers in 2003, which got worse and

more frequent for the next couple of years. In late 2005 I went to the emergency

room, and they did a bunch of tests. When they got to the HIDA scan they

discovered that the liver didn’t drain. They tried an ERCP but couldn’t get up

the bile duct. After a couple of other tries and a massive blood infection resulting

from one of the ERCPs they did a Rue-en-Y to remove and replace my common bile duct

with small intestine.

Infections, chills, fevers, etc. continued until

last March. Was again hospitalized, they tried an ERCP and couldn’t get up the

anastamosis, so the interventional radiologist went in through my side and did

a cholangiogram. They discovered that the internal ducts were strictured and he

put in a biliary drain. It keeps the bile draining as efficiently as possible

now.

But here’s the problem – I still get

intermittent fevers, and the same kind of symptoms that I used to with the

horrible infections. But they aren’t as severe. The fevers spike to around 102,

but they don’t stay there long. So I can have 101.7, go to the hospital, and it’s

back down to 99.4. There’s enough drainage that the LFTs look reasonably low. Then

add to that the fact that no matter how sick I got before, I never got

jaundiced. My current bilirubin is .4.

Dr Lepe said that the tube is putting a band-aid

on my disease. Doesn’t make it go away, just keeps me functional. At the same

time it makes documenting my need for a transplant much harder.

Hope this explains the situation better,

Nita

========================

How old are you? I'm 50. I was dx '01.

[Guest guest]

Hi Cheryl,

I’m 62. Started having elevated liver enzymes

about 12 years ago. Was mistakenly diagnosed with autoimmune hepatitis a few

years later. Started getting chills and fevers in 2003, which got worse and

more frequent for the next couple of years. In late 2005 I went to the emergency

room, and they did a bunch of tests. When they got to the HIDA scan they

discovered that the liver didn’t drain. They tried an ERCP but couldn’t get up

the bile duct. After a couple of other tries and a massive blood infection resulting

from one of the ERCPs they did a Rue-en-Y to remove and replace my common bile duct

with small intestine.

Infections, chills, fevers, etc. continued until

last March. Was again hospitalized, they tried an ERCP and couldn’t get up the

anastamosis, so the interventional radiologist went in through my side and did

a cholangiogram. They discovered that the internal ducts were strictured and he

put in a biliary drain. It keeps the bile draining as efficiently as possible

now.

But here’s the problem – I still get

intermittent fevers, and the same kind of symptoms that I used to with the

horrible infections. But they aren’t as severe. The fevers spike to around 102,

but they don’t stay there long. So I can have 101.7, go to the hospital, and it’s

back down to 99.4. There’s enough drainage that the LFTs look reasonably low. Then

add to that the fact that no matter how sick I got before, I never got

jaundiced. My current bilirubin is .4.

Dr Lepe said that the tube is putting a band-aid

on my disease. Doesn’t make it go away, just keeps me functional. At the same

time it makes documenting my need for a transplant much harder.

Hope this explains the situation better,

Nita

========================

How old are you? I'm 50. I was dx '01.

[Guest guest]

Anita,I think your chances of getting carcinoma are much lower than that now. If your going to get it, it seems to strike usually in the first couple of years after getting PSC. It seem much rarer in us longtime PSCers. (God willing!)

Ian (52) PSC 89On Tue, Feb 24, 2009 at 6:27 PM, Anita Oakley wrote " Also,

my chances of cholangiocarcinoma are about 15%, and with our family history I

don’t want to take chances, you know? "

[Guest guest]

Anita,I think your chances of getting carcinoma are much lower than that now. If your going to get it, it seems to strike usually in the first couple of years after getting PSC. It seem much rarer in us longtime PSCers. (God willing!)

Ian (52) PSC 89On Tue, Feb 24, 2009 at 6:27 PM, Anita Oakley wrote " Also,

my chances of cholangiocarcinoma are about 15%, and with our family history I

don’t want to take chances, you know? "

[Guest guest]

That is good news! With my family history I can use all the help

I can get. Cancer of all different kinds, all over the place!

=============

I think your chances of getting carcinoma

are much lower than that now. If your going to get it, it seems to

strike usually in the first couple of years after getting PSC. It seem much

rarer in us longtime PSCers. (God willing!)

Ian (52) PSC 89