RE: Future - Tranplant hopes or not?

August 8, 2006

Barbara,

I am new to the group but from what I have

read about the condition (my 25 year old daughter has had it for several years)

it’s not something that goes in to remission. I read on one website

that the course of the disease means that everyone would eventually need a

transplant within 10 years of diagnosis but my daughter is approaching 6

years. My daughters doctor seemed to confirm that when I spoke with him.

I think there are things you can do to

delay it but I think eventually your immune system does sufficient damage that

the liver must be replaced.

Darv

From:

[mailto: ] On Behalf Of Barbara Webber

Sent: Tuesday, August 08, 2006

3:07 PM

To:

Subject: Future - Tranplant

hopes or not?

Does anyone know what the odds are of needing a liver

transplant for

PSCers? I'm 45, was just diagnosed last year, but cholingitis was

seen in my ducts 8 years ago, and pain in that area and trouble with

gall bladder started in my 20s...I'm in the process of having to make

some decisions regarding being a single mom - and how close to live to

my 8 year old daughter's father ... the obvious concern being, what if

I get sicker and need health support or a transplant...I'm already

relying on him more and more just from fatigue and pain, but so far no

cirhosis has been uncovered - just duct problems.

I never know if I should pray to get on a list and get a new liver so

I'll feel better, or hope that I never need one...what do you all

think? I don't know if we can predict with certainty, but I know I

don't have enough knowledge to know and my doctor avoids the subject

thus far...

hope you can help

barbara

August 8, 2006

Barbara,

I am new to the group but from what I have

read about the condition (my 25 year old daughter has had it for several years)

it’s not something that goes in to remission. I read on one website

that the course of the disease means that everyone would eventually need a

transplant within 10 years of diagnosis but my daughter is approaching 6

years. My daughters doctor seemed to confirm that when I spoke with him.

I think there are things you can do to

delay it but I think eventually your immune system does sufficient damage that

the liver must be replaced.

Darv

From:

[mailto: ] On Behalf Of Barbara Webber

Sent: Tuesday, August 08, 2006

3:07 PM

To:

Subject: Future - Tranplant

hopes or not?

Does anyone know what the odds are of needing a liver

transplant for

PSCers? I'm 45, was just diagnosed last year, but cholingitis was

seen in my ducts 8 years ago, and pain in that area and trouble with

gall bladder started in my 20s...I'm in the process of having to make

some decisions regarding being a single mom - and how close to live to

my 8 year old daughter's father ... the obvious concern being, what if

I get sicker and need health support or a transplant...I'm already

relying on him more and more just from fatigue and pain, but so far no

cirhosis has been uncovered - just duct problems.

I never know if I should pray to get on a list and get a new liver so

I'll feel better, or hope that I never need one...what do you all

think? I don't know if we can predict with certainty, but I know I

don't have enough knowledge to know and my doctor avoids the subject

thus far...

hope you can help

barbara

August 8, 2006

Barbara,

I forgot to mention that one thing I have

noted with my daughters condition is that even though several family members

have volunteered to provide her with a living donor transplant, the doctors won’t

even consider it until the disease is in its final stage. At first I found

this odd given her suffering with the illness. I would think they would want

to alleviate that if possible especially for someone so young and with a young

child. But from what the doctors have told me, there is significant risk for

any transplant surgery so they want the patient to hold out till the final

stage of the disease which has been explained to me as Stage 4. My daughter is

currently in Stage 3. But she has been in that stage for the last 6 years.

For what it is worth…

My daughter has a 100% positive attitude

about her illness. She expects to make a full recovery and has no doubts about

it. I wish I could have the courage she shows.

She is much more religious than I and prays daily. It helps her to maintain her

positive attitude. I highly recommend it and what ever you do, do not pray

alone. Get your church and pastor (preist or other religious leader)

involved. Her pastor has been a great help to her.

Do as you are doing now by contacting others that understand your condition.

I was diagnosed with Still’s disease and it was very helpful to find a

list that understood how I felt. My wife and even my doctors really had no clue.

Eat right and get as much exercise as you can. You will need your strength when

and if you do have surgery. The better fit you are, the more likely you will

be at the top of the recipient list and the more likely you will make a full

recovery.

Lastly, learn all you can about the disease. This may be scary and you may not

want to know, but you can make better choices if you are informed. I learned

more about Still’s disease than some of the doctors I worked with. I

knew about new drugs, procedures and alternative medicine than they did. This

is one of the best places to find out about such things.

Good luck to you and though I said I am

not a very religious person, for what it is worth, my prayers are with you.

Darv

From: [mailto: ] On Behalf Of Barbara Webber

Sent: Tuesday, August 08, 2006

3:07 PM

To:

Subject: Future -

Tranplant hopes or not?

Does anyone know what the odds are of needing a liver

transplant for

PSCers? I'm 45, was just diagnosed last year, but cholingitis was

seen in my ducts 8 years ago, and pain in that area and trouble with

gall bladder started in my 20s...I'm in the process of having to make

some decisions regarding being a single mom - and how close to live to

my 8 year old daughter's father ... the obvious concern being, what if

I get sicker and need health support or a transplant...I'm already

relying on him more and more just from fatigue and pain, but so far no

cirhosis has been uncovered - just duct problems.

I never know if I should pray to get on a list and get a new liver so

I'll feel better, or hope that I never need one...what do you all

think? I don't know if we can predict with certainty, but I know I

don't have enough knowledge to know and my doctor avoids the subject

thus far...

hope you can help

barbara

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August 8, 2006

Thanks Darv (and Barb H.)

I wonder why my doc won't talk about it...to me information is

helpful... I agree it doesn't go into remission, I've just heard

there are some folks with the disease for 25 years plus, without a

transplant...at least I think that's what I've heard...so hard to

determine these things.

anyhow, thanks for the response, I'll be interested in seeing if this

is the consensus...

anybody else? Is anyone just living with pain and fatigue and not had

to face the transplant question after several years??

barbara

>

August 8, 2006

Thanks Darv (and Barb H.)

I wonder why my doc won't talk about it...to me information is

helpful... I agree it doesn't go into remission, I've just heard

there are some folks with the disease for 25 years plus, without a

transplant...at least I think that's what I've heard...so hard to

determine these things.

anyhow, thanks for the response, I'll be interested in seeing if this

is the consensus...

anybody else? Is anyone just living with pain and fatigue and not had

to face the transplant question after several years??

barbara

>

August 9, 2006

I'm not sure how to reply to Barb's pessimistic assertion that 100% of us are going to need a liver tx. This is not our group's experience in the UK. About 20% of our 400 members have been transplanted. Perhaps another 10% have been or are being assessed. We can't be sure about that because we're not in touch with many of our members. Of course many more may ultimately need a tx. We're working in the dark here. It's an iceberg and we can only see the top of it. We don't know what the total PSC population is of course. Many are never seen by doctors because they don't have symptoms and it's often the case that PSC is discovered by chance. It's also being described as a much more benign disease than has previously been supposed. Benign is not a word that most of us in this Group would choose to use but, as has been stressed before, many of us are here because we have considerable suffering and we may not be typical. This is not the case with many people who have the luck to be asymptomatic, often for many years, with a disease that is very slowly progressive and they may get away with not needing a tx. I don't know of any data which could help us on this because it's un-knowable.

Ivor

August 9, 2006

I'm not sure how to reply to Barb's pessimistic assertion that 100% of us are going to need a liver tx. This is not our group's experience in the UK. About 20% of our 400 members have been transplanted. Perhaps another 10% have been or are being assessed. We can't be sure about that because we're not in touch with many of our members. Of course many more may ultimately need a tx. We're working in the dark here. It's an iceberg and we can only see the top of it. We don't know what the total PSC population is of course. Many are never seen by doctors because they don't have symptoms and it's often the case that PSC is discovered by chance. It's also being described as a much more benign disease than has previously been supposed. Benign is not a word that most of us in this Group would choose to use but, as has been stressed before, many of us are here because we have considerable suffering and we may not be typical. This is not the case with many people who have the luck to be asymptomatic, often for many years, with a disease that is very slowly progressive and they may get away with not needing a tx. I don't know of any data which could help us on this because it's un-knowable.

Ivor

August 12, 2006

Hi Barbara

I am a single Dad with 3 kids living with me so I understand the

problems you are having.

My first thought would be get a different Doctor! Your doc should be

helping and advising not avoiding stuff. I don't know if you are

under a transplant / psc specialist but u need to be. I have been

violently opposed to a tx not least because of the risks of not

surviving etc and I figured best to stay alive as long a sposs 4 the

kids. However as the disease has progressed, and I have become

increasingly fatigued I find it difficult to have enough energy 4

the kids and figure it might be alot better to have a (hopefully)

successful tx. A lot of peopel say they feel amazingly better

afterwards.

So I would be guided a lot about how u feel & what u can do. But of

course by your doc who should give u some idea of if u are getting

near tx etc.

Tim (UK)

PSC 01 UC osteoporosis, vitiligo etc etc

>

> Does anyone know what the odds are of needing a liver transplant

for

> PSCers? I'm 45, was just diagnosed last year, but cholingitis was

> seen in my ducts 8 years ago, and pain in that area and trouble

with

> gall bladder started in my 20s...I'm in the process of having to

make

> some decisions regarding being a single mom - and how close to

live to

> my 8 year old daughter's father ... the obvious concern being,

what if

> I get sicker and need health support or a transplant...I'm already

> relying on him more and more just from fatigue and pain, but so

far no

> cirhosis has been uncovered - just duct problems.

>

> I never know if I should pray to get on a list and get a new liver

so

> I'll feel better, or hope that I never need one...what do you all

> think? I don't know if we can predict with certainty, but I know

I

> don't have enough knowledge to know and my doctor avoids the

subject

> thus far...

>

> hope you can help

>

> barbara

>

August 12, 2006