Re: Another Newbie & Another Barbara

[Guest guest]

>

> I joined the group about a month ago and have been reading and

> learning. My husband, , was dx 1/07 with PSC. At that time he

>

One more thing, is in the process of being listed, however his MELD is only

8 and has

been 8-10 in the last year.

It sounds like he is like so many of you - sicker than his blood work indicates.

This whole

thing sucks and I'm exhausted and I know that this is just a taste of what's

ahead.

Barbara

[Guest guest]

>

> I joined the group about a month ago and have been reading and

> learning. My husband, , was dx 1/07 with PSC. At that time he

>

One more thing, is in the process of being listed, however his MELD is only

8 and has

been 8-10 in the last year.

It sounds like he is like so many of you - sicker than his blood work indicates.

This whole

thing sucks and I'm exhausted and I know that this is just a taste of what's

ahead.

Barbara

[Guest guest]

Barbara,

There are many of us that are sicker than our blood work currently

shows. I am finding that a mixed blessing myself. I know I feel awful

most of the time, " feeling ill " so so subjective. Doctors and the MELD

system is strictly non-subjective and based on data from a persons

blood work.

Therefore I find it easy to feel dismissed by the medical system, and

going to the doctor when I feel bad is just a waste of money, time and

energy.

Just know that you are not alone on this journey and you have found a

group of caring, resourseful people.

PSC 5/07 Listed

[Guest guest]

Barbara,

There are many of us that are sicker than our blood work currently

shows. I am finding that a mixed blessing myself. I know I feel awful

most of the time, " feeling ill " so so subjective. Doctors and the MELD

system is strictly non-subjective and based on data from a persons

blood work.

Therefore I find it easy to feel dismissed by the medical system, and

going to the doctor when I feel bad is just a waste of money, time and

energy.

Just know that you are not alone on this journey and you have found a

group of caring, resourseful people.

PSC 5/07 Listed

[Guest guest]

Barbara,

There are many of us that are sicker than our blood work currently

shows. I am finding that a mixed blessing myself. I know I feel awful

most of the time, " feeling ill " so so subjective. Doctors and the MELD

system is strictly non-subjective and based on data from a persons

blood work.

Therefore I find it easy to feel dismissed by the medical system, and

going to the doctor when I feel bad is just a waste of money, time and

energy.

Just know that you are not alone on this journey and you have found a

group of caring, resourseful people.

PSC 5/07 Listed

[Guest guest]

Welcome Barbara,

It's not confirmed that the future will be more of the same or worse. I've had PSC for 19 years now, but have only been a member of this group since last summer. Reading posts I found that the disease and medicines work differently in all of us. Although I have had PSC a long time there are group members that have had it longer. There are also group members that have gotten a new lease on life by having a liver transplant. When going through a rough patch its good to be a part of this group and know you can share with others that know what its about. Before joining this group I did not know another that had PSC.

Ian (52) PSC 89

>> I joined the group about a month ago and have been reading and > learning. My husband, , was dx 1/07 with PSC. At that time he > One more thing, is in the process of being listed, however his MELD is only 8 and has

been 8-10 in the last year.It sounds like he is like so many of you - sicker than his blood work indicates. This whole thing sucks and I'm exhausted and I know that this is just a taste of what's ahead.

Barbara -- Ian Cribb former P.Eng. (resigned in good standing)

[Guest guest]

Welcome Barbara,

It's not confirmed that the future will be more of the same or worse. I've had PSC for 19 years now, but have only been a member of this group since last summer. Reading posts I found that the disease and medicines work differently in all of us. Although I have had PSC a long time there are group members that have had it longer. There are also group members that have gotten a new lease on life by having a liver transplant. When going through a rough patch its good to be a part of this group and know you can share with others that know what its about. Before joining this group I did not know another that had PSC.

Ian (52) PSC 89

>> I joined the group about a month ago and have been reading and > learning. My husband, , was dx 1/07 with PSC. At that time he > One more thing, is in the process of being listed, however his MELD is only 8 and has

been 8-10 in the last year.It sounds like he is like so many of you - sicker than his blood work indicates. This whole thing sucks and I'm exhausted and I know that this is just a taste of what's ahead.

Barbara -- Ian Cribb former P.Eng. (resigned in good standing)

[Guest guest]

Welcome Barbara,

It's not confirmed that the future will be more of the same or worse. I've had PSC for 19 years now, but have only been a member of this group since last summer. Reading posts I found that the disease and medicines work differently in all of us. Although I have had PSC a long time there are group members that have had it longer. There are also group members that have gotten a new lease on life by having a liver transplant. When going through a rough patch its good to be a part of this group and know you can share with others that know what its about. Before joining this group I did not know another that had PSC.

Ian (52) PSC 89

>> I joined the group about a month ago and have been reading and > learning. My husband, , was dx 1/07 with PSC. At that time he > One more thing, is in the process of being listed, however his MELD is only 8 and has

been 8-10 in the last year.It sounds like he is like so many of you - sicker than his blood work indicates. This whole thing sucks and I'm exhausted and I know that this is just a taste of what's ahead.

Barbara -- Ian Cribb former P.Eng. (resigned in good standing)

[Guest guest]

Barbara,

I really feel for you. I don't know if this will help in your situation. I quit

teaching high school English in the fall of 2002. I was so sure I could teach

another school year in the spring of '02. My principal was not supportive of

me. He told me he needed me to hurry up and make a decision because if I quit

they would have to lay off, one of my colleagues (budget cuts). I committed to

the next year and then just couldn't't make it any more and didn't go past OCT.

it was hardest on the kids. One thing that was a huge advantage for me--the

rate of my disease slowed down. It is a very personal decision. My husband left

it totally to me. I almost wish he had given me more of an opinion. I know there

are people who have continued to work who are " sicker " than I am (closer to

end-stage) and feel worse. I didn't base it on other people's perceptions. But

once again, I did not have a supportive principal. That made a huge difference.

It was hard to go without income until my SSD

was approved. I have a friend who had 5 plus organ transplant (national news 5

or 6 years ago now--, Burley,ID man Pollard) he worked right up until

the call. He had a very accommodating company. There are so many things to

consider. I can't imagine your husband wanting to continue, but then I miss

teaching so much I can't tell you.If your husband is going to retire in one

more year, then he won't be on SSD, he'll be retired.

In answer to the other part of your question end-stage liver disease

actually has another 4 stages to it. It begins with cirrhosis. A person could

take years to go through the first three stages or within weeks. In order to

stage the liver disease a biopsy must be done. I don't have all the info on

the 4 stages of end-stage liver disease, but I will research it if someone

does't have it handy. Liver failure can isn't clear cut either. Fulminant is

" acute liver failure accompanied by the development of encephalopathy within

eight weeks of onset of symptoms or within two weeks of the onset of jaundice

(Palmer). People can function (not well) with 10% of their liver intact. When

our livers are diseased they become enlarged as they grow new cells fibrosis is

part of this process. Finally our liver cannot grow anymore. then they start

decompensation (shrinking). this is accompanied by internal bleeding, jaundice,

encephalopathy, and or ascities. Not necessarily all at once.

Ihope some of this helps. I have to go. Didn't proof read. Cheryl ID 49,

PSC/AIH/UC/firomyalgia (ascities, mild encephalopathy)

-

>

> 's labs are good although the MRCP told a completely different

> story. The docs say that he is one of those with PSC who is sicker

> than the labs say he is. The image rpt said " end-stage liver

> disease " from PSC. He has been hospitalized 3x in '08 with

> encephalopathy and that continues to get worse, along with itching

> and extreme exhaustion. He continues to work (he teaches 4th grade)

> and I have finally agreed to let and his principal determine

> when and if he goes on disability.

>

> My question is: WHAT DOES ALL OF THIS MEAN? What does end-stage

> liver failure mean opposed to just liver failure as it has been on

> the other reports?

>

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> Barbara (wife of 60) PSC 1/07, Osteo 3/07, Chr Pancr 06

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