Re: New - and so happy to have found a group

December 31, 2008

I am sorry you had to find us, but welcome, you will find support and

a lot of knowledge here,

Dawn

>

> Hello all,

>

> I found this group through someone on a forum at transplant

buddies. I went

> there because I was freaking out about being on the liver

transplant list.

>

> My illness started out with high liver enzymes in the late 1990s,

and in

> 2003 started getting intermittent high fevers. I've never had

really high

> biliruben or jaundice. But the AST, ALT, GGC levels go through the

roof, and

> I get these horrible infections.

>

> In 2005 they figured out that my common bile duct had an inch long

> stricture. Before they figured out that my liver wasn't draining,

the

> hospital staff called me " the mystery woman, " and ran every test in

the

> book. Then they ran some kind of nuclear test - the material was

supposed to

> go to the liver, and then drain into the gall bladder and

intestines - but

> it stayed in the liver. They tried an ERCP and couldn't get up the

bile

> duct, so they referred me to a surgeon.

>

> The surgeon was just sure I had bile duct cancer. That's when they

did a

> Roux-en-Y. After he operated he said that I didn't have cancer, but

I did

> have an annular pancreas which might have caused the stricture

squeezing off

> my common bile duct, and that probably with the new duct he

constructed, I

> wouldn't have any more trouble.

>

> Within 6 months I was having infections again, which I kept at bay

with

> antibiotics. Finally I got one really nasty infection in March of

this year.

> Went to the emergency room, and my AST was over 900. They

transferred me to

> the hospital where I had the surgery, and I saw the surgeon again.

He said I

> had PSC.

>

> My interventional radiologist put in a biliary tube drain - took

him almost

> 4 hours because some of the spots he had to thread through were

about the

> size of a human hair. He said he thought I had SSC, and that the

tube would

> put me right. Both doctors said I should see a Hepatologist.

>

> My hepatologist reviewed all the records and monitored my enzyme

levels. I

> had another infection when I was in Germany in September. Try going

to the

> hospital when you don't speak the same language as the nurses and

lab

> people. My enzymes had started going back up, and my hepatologist

said it

> was time to get on the list.

>

> Because I'm dependent on the tube, I have a MELD of 20 even with

lower

> biliruben levels. But that's only for 3 months, and if I don't get

a liver

> before then, the new rules take effect and I go down to just the

MELD that

> the blood tests would indicate.

>

> At the same time, I'm feeling worse - tireder and my brain seems

foggier. My

> upper abdomine feels " yucky. " Not to be indelicate, but my poop is

turning

> light in color, which indicates some serious drainage issues. I've

got an

> appt with my internist to see if I should have fresh blood tests.

>

> I'm also feeling sort of sorry for myself not to have my husband

around to

> help me through this. I no sooner started recovering from the Roux-

en-Y,

> when he started having respiratory symtoms. He died in Nov 2006

from lung

> cancer. He's always been there through thick and thin, hip

replacements and

> other stuff. Now, even though I have good friends and some family

around, I

> have to go through this without Dave.

>

> Thanks for listening.

>

> Nita

>

December 31, 2008

I am sorry you had to find us, but welcome, you will find support and

a lot of knowledge here,

Dawn

>

> Hello all,

>

> I found this group through someone on a forum at transplant

buddies. I went

> there because I was freaking out about being on the liver

transplant list.

>

> My illness started out with high liver enzymes in the late 1990s,

and in

> 2003 started getting intermittent high fevers. I've never had

really high

> biliruben or jaundice. But the AST, ALT, GGC levels go through the

roof, and

> I get these horrible infections.

>

> In 2005 they figured out that my common bile duct had an inch long

> stricture. Before they figured out that my liver wasn't draining,

the

> hospital staff called me " the mystery woman, " and ran every test in

the

> book. Then they ran some kind of nuclear test - the material was

supposed to

> go to the liver, and then drain into the gall bladder and

intestines - but

> it stayed in the liver. They tried an ERCP and couldn't get up the

bile

> duct, so they referred me to a surgeon.

>

> The surgeon was just sure I had bile duct cancer. That's when they

did a

> Roux-en-Y. After he operated he said that I didn't have cancer, but

I did

> have an annular pancreas which might have caused the stricture

squeezing off

> my common bile duct, and that probably with the new duct he

constructed, I

> wouldn't have any more trouble.

>

> Within 6 months I was having infections again, which I kept at bay

with

> antibiotics. Finally I got one really nasty infection in March of

this year.

> Went to the emergency room, and my AST was over 900. They

transferred me to

> the hospital where I had the surgery, and I saw the surgeon again.

He said I

> had PSC.

>

> My interventional radiologist put in a biliary tube drain - took

him almost

> 4 hours because some of the spots he had to thread through were

about the

> size of a human hair. He said he thought I had SSC, and that the

tube would

> put me right. Both doctors said I should see a Hepatologist.

>

> My hepatologist reviewed all the records and monitored my enzyme

levels. I

> had another infection when I was in Germany in September. Try going

to the

> hospital when you don't speak the same language as the nurses and

lab

> people. My enzymes had started going back up, and my hepatologist

said it

> was time to get on the list.

>

> Because I'm dependent on the tube, I have a MELD of 20 even with

lower

> biliruben levels. But that's only for 3 months, and if I don't get

a liver

> before then, the new rules take effect and I go down to just the

MELD that

> the blood tests would indicate.

>

> At the same time, I'm feeling worse - tireder and my brain seems

foggier. My

> upper abdomine feels " yucky. " Not to be indelicate, but my poop is

turning

> light in color, which indicates some serious drainage issues. I've

got an

> appt with my internist to see if I should have fresh blood tests.

>

> I'm also feeling sort of sorry for myself not to have my husband

around to

> help me through this. I no sooner started recovering from the Roux-

en-Y,

> when he started having respiratory symtoms. He died in Nov 2006

from lung

> cancer. He's always been there through thick and thin, hip

replacements and

> other stuff. Now, even though I have good friends and some family

around, I

> have to go through this without Dave.

>

> Thanks for listening.

>

> Nita

>

December 31, 2008

I am sorry you had to find us, but welcome, you will find support and

a lot of knowledge here,

Dawn

>

> Hello all,

>

> I found this group through someone on a forum at transplant

buddies. I went

> there because I was freaking out about being on the liver

transplant list.

>

> My illness started out with high liver enzymes in the late 1990s,

and in

> 2003 started getting intermittent high fevers. I've never had

really high

> biliruben or jaundice. But the AST, ALT, GGC levels go through the

roof, and

> I get these horrible infections.

>

> In 2005 they figured out that my common bile duct had an inch long

> stricture. Before they figured out that my liver wasn't draining,

the

> hospital staff called me " the mystery woman, " and ran every test in

the

> book. Then they ran some kind of nuclear test - the material was

supposed to

> go to the liver, and then drain into the gall bladder and

intestines - but

> it stayed in the liver. They tried an ERCP and couldn't get up the

bile

> duct, so they referred me to a surgeon.

>

> The surgeon was just sure I had bile duct cancer. That's when they

did a

> Roux-en-Y. After he operated he said that I didn't have cancer, but

I did

> have an annular pancreas which might have caused the stricture

squeezing off

> my common bile duct, and that probably with the new duct he

constructed, I

> wouldn't have any more trouble.

>

> Within 6 months I was having infections again, which I kept at bay

with

> antibiotics. Finally I got one really nasty infection in March of

this year.

> Went to the emergency room, and my AST was over 900. They

transferred me to

> the hospital where I had the surgery, and I saw the surgeon again.

He said I

> had PSC.

>

> My interventional radiologist put in a biliary tube drain - took

him almost

> 4 hours because some of the spots he had to thread through were

about the

> size of a human hair. He said he thought I had SSC, and that the

tube would

> put me right. Both doctors said I should see a Hepatologist.

>

> My hepatologist reviewed all the records and monitored my enzyme

levels. I

> had another infection when I was in Germany in September. Try going

to the

> hospital when you don't speak the same language as the nurses and

lab

> people. My enzymes had started going back up, and my hepatologist

said it

> was time to get on the list.

>

> Because I'm dependent on the tube, I have a MELD of 20 even with

lower

> biliruben levels. But that's only for 3 months, and if I don't get

a liver

> before then, the new rules take effect and I go down to just the

MELD that

> the blood tests would indicate.

>

> At the same time, I'm feeling worse - tireder and my brain seems

foggier. My

> upper abdomine feels " yucky. " Not to be indelicate, but my poop is

turning

> light in color, which indicates some serious drainage issues. I've

got an

> appt with my internist to see if I should have fresh blood tests.

>

> I'm also feeling sort of sorry for myself not to have my husband

around to

> help me through this. I no sooner started recovering from the Roux-

en-Y,

> when he started having respiratory symtoms. He died in Nov 2006

from lung

> cancer. He's always been there through thick and thin, hip

replacements and

> other stuff. Now, even though I have good friends and some family

around, I

> have to go through this without Dave.

>

> Thanks for listening.

>

> Nita

>

December 31, 2008

Hi Nita

Welcome, as Dawn wrote, you will find a wealth of support and

knowledge about PSC with this group.

It is sad your husband is no longer alive, our partners can be a tower

of strength in times of illness.

Best wishes from the bottom of the world in New Zealand.

>

> I am sorry you had to find us, but welcome, you will find support and

> a lot of knowledge here,

>

> Dawn

December 31, 2008

Hi Nita

Welcome, as Dawn wrote, you will find a wealth of support and

knowledge about PSC with this group.

It is sad your husband is no longer alive, our partners can be a tower

of strength in times of illness.

Best wishes from the bottom of the world in New Zealand.

>

> I am sorry you had to find us, but welcome, you will find support and

> a lot of knowledge here,

>

> Dawn

December 31, 2008

Hi Nita

Welcome, as Dawn wrote, you will find a wealth of support and

knowledge about PSC with this group.

It is sad your husband is no longer alive, our partners can be a tower

of strength in times of illness.

Best wishes from the bottom of the world in New Zealand.

>

> I am sorry you had to find us, but welcome, you will find support and

> a lot of knowledge here,

>

> Dawn

December 31, 2008

Hello,

I am new to the group as well. I have found it to be a breath of fresh air. We are not alone. Still learning myself. Would love to chat more. Soon.

I am a nurse at our local hospital ( I am at work)so I will keep it brief for now.

KIT

Sending love , laughter, good energy!

Namaste',

Subject: New - and so happy to have found a groupTo: Date: Wednesday, December 31, 2008, 7:23 AM

Hello all,

I found this group through someone on a forum at transplant buddies. I went there because I was freaking out about being on the liver transplant list.

My illness started out with high liver enzymes in the late 1990s, and in 2003 started getting intermittent high fevers. I've never had really high biliruben or jaundice. But the AST, ALT, GGC levels go through the roof, and I get these horrible infections.

In 2005 they figured out that my common bile duct had an inch long stricture. Before they figured out that my liver wasn't draining, the hospital staff called me "the mystery woman," and ran every test in the book. Then they ran some kind of nuclear test – the material was supposed to go to the liver, and then drain into the gall bladder and intestines – but it stayed in the liver. They tried an ERCP and couldn’t get up the bile duct, so they referred me to a surgeon.

The surgeon was just sure I had bile duct cancer. That's when they did a Roux-en-Y. After he operated he said that I didn't have cancer, but I did have an annular pancreas which might have caused the stricture squeezing off my common bile duct, and that probably with the new duct he constructed, I wouldn't have any more trouble.

Within 6 months I was having infections again, which I kept at bay with antibiotics. Finally I got one really nasty infection in March of this year. Went to the emergency room, and my AST was over 900. They transferred me to the hospital where I had the surgery, and I saw the surgeon again. He said I had PSC.

My interventional radiologist put in a biliary tube drain – took him almost 4 hours because some of the spots he had to thread through were about the size of a human hair. He said he thought I had SSC, and that the tube would put me right. Both doctors said I should see a Hepatologist.

My hepatologist reviewed all the records and monitored my enzyme levels. I had another infection when I was in Germany in September. Try going to the hospital when you don't speak the same language as the nurses and lab people. My enzymes had started going back up, and my hepatologist said it was time to get on the list.

Because I'm dependent on the tube, I have a MELD of 20 even with lower biliruben levels. But that's only for 3 months, and if I don't get a liver before then, the new rules take effect and I go down to just the MELD that the blood tests would indicate.

At the same time, I'm feeling worse - tireder and my brain seems foggier. My upper abdomine feels "yucky." Not to be indelicate, but my poop is turning light in color, which indicates some serious drainage issues. I've got an appt with my internist to see if I should have fresh blood tests.

I'm also feeling sort of sorry for myself not to have my husband around to help me through this. I no sooner started recovering from the Roux-en-Y, when he started having respiratory symtoms. He died in Nov 2006 from lung cancer. He's always been there through thick and thin, hip replacements and other stuff. Now, even though I have good friends and some family around, I have to go through this without Dave.

Thanks for listening…

Nita

December 31, 2008