Re: LIVING DONOR-

[Guest guest]

There are several reasons why they wait to transplant -even with living donors. The longer you can keep your own parts the better off you are. I know at times it doesn't seem like it, as your health goes down the tubes, but it is true. Second, transplant surgery is no walk in the park. It is dangerous and very complicated. So it's best to wait until you really do need it. You said yourself you "are not to the point of needing a transplant." Third, and sometimes I think it's where the doctor's are coming from - the donor puts him/herself at great risk. Doctor's don't like to take any risks, without being sure the benefit out weighs that risk. In PSC as long as we can still function fairly well, the docs don't think it's worth the risk to the donor.

I think we all want & need what "getting listed" provides.

It gives us a sense of security we can't get anywhere else. Like a tight rope walker with a net. But as long as we can hold off the better it is.

I probably haven't gotten this all right and may not have written well enough to understand. But I'm sure Maureen or Tim or someone else will answer better then I did.

Barb In Texas

Son Ken (28)

UC 91 PSC 99

[Guest guest]

There are several reasons why they wait to transplant -even with living donors. The longer you can keep your own parts the better off you are. I know at times it doesn't seem like it, as your health goes down the tubes, but it is true. Second, transplant surgery is no walk in the park. It is dangerous and very complicated. So it's best to wait until you really do need it. You said yourself you "are not to the point of needing a transplant." Third, and sometimes I think it's where the doctor's are coming from - the donor puts him/herself at great risk. Doctor's don't like to take any risks, without being sure the benefit out weighs that risk. In PSC as long as we can still function fairly well, the docs don't think it's worth the risk to the donor.

I think we all want & need what "getting listed" provides.

It gives us a sense of security we can't get anywhere else. Like a tight rope walker with a net. But as long as we can hold off the better it is.

I probably haven't gotten this all right and may not have written well enough to understand. But I'm sure Maureen or Tim or someone else will answer better then I did.

Barb In Texas

Son Ken (28)

UC 91 PSC 99

[Guest guest]

There are several reasons why they wait to transplant -even with living donors. The longer you can keep your own parts the better off you are. I know at times it doesn't seem like it, as your health goes down the tubes, but it is true. Second, transplant surgery is no walk in the park. It is dangerous and very complicated. So it's best to wait until you really do need it. You said yourself you "are not to the point of needing a transplant." Third, and sometimes I think it's where the doctor's are coming from - the donor puts him/herself at great risk. Doctor's don't like to take any risks, without being sure the benefit out weighs that risk. In PSC as long as we can still function fairly well, the docs don't think it's worth the risk to the donor.

I think we all want & need what "getting listed" provides.

It gives us a sense of security we can't get anywhere else. Like a tight rope walker with a net. But as long as we can hold off the better it is.

I probably haven't gotten this all right and may not have written well enough to understand. But I'm sure Maureen or Tim or someone else will answer better then I did.

Barb In Texas

Son Ken (28)

UC 91 PSC 99

[Guest guest]

I think we all want & need what "getting listed" provides.

It gives us a sense of security we can't get anywhere else. Like a tight rope walker with a net. But as long as we can hold off the better it is.

Barb,

I agree with you in that I have always thought of transplantation as a light at the end of a tunnel. Something to hold on to while I'm feeling uck at the moment. I felt rather shattered when my gi/hep said he didn't think I would ever need a new liver or at least not for a very long time. Shook me rather I'm afraid.

Barbara (UK)

[Guest guest]

I think we all want & need what "getting listed" provides.

It gives us a sense of security we can't get anywhere else. Like a tight rope walker with a net. But as long as we can hold off the better it is.

Barb,

I agree with you in that I have always thought of transplantation as a light at the end of a tunnel. Something to hold on to while I'm feeling uck at the moment. I felt rather shattered when my gi/hep said he didn't think I would ever need a new liver or at least not for a very long time. Shook me rather I'm afraid.

Barbara (UK)

[Guest guest]

I think we all want & need what "getting listed" provides.

It gives us a sense of security we can't get anywhere else. Like a tight rope walker with a net. But as long as we can hold off the better it is.

Barb,

I agree with you in that I have always thought of transplantation as a light at the end of a tunnel. Something to hold on to while I'm feeling uck at the moment. I felt rather shattered when my gi/hep said he didn't think I would ever need a new liver or at least not for a very long time. Shook me rather I'm afraid.

Barbara (UK)

[Guest guest]

Barb,

You wrote and answered, just fine. I know these things and I understand, but

at the same time find myself still hoping they won't wait until I am too sick

to think life is worth fighting for. I am doing okay with my

less-than-perfect liver now, but hope when I've had enough, they agree with

me. I'm sure we all feel this way. I'd like to think that I'm not going to

get to that point, but the reality of PSC suggests otherwise.

Thank you for your response. It's nice to be reminded, by a sane person,

what the reality of this transplant " waiting " is!

[Guest guest]

Barb,

You wrote and answered, just fine. I know these things and I understand, but

at the same time find myself still hoping they won't wait until I am too sick

to think life is worth fighting for. I am doing okay with my

less-than-perfect liver now, but hope when I've had enough, they agree with

me. I'm sure we all feel this way. I'd like to think that I'm not going to

get to that point, but the reality of PSC suggests otherwise.

Thank you for your response. It's nice to be reminded, by a sane person,

what the reality of this transplant " waiting " is!

[Guest guest]

,

Phil and I feel the same way you do, although I think

you may be more advanced than Phil is right now. We

do have to keep in mind that when things happen like

Michele Bruno, where your colitis flare so bad they

almost removed it, that seemed to speed things way up

for her and she almost didn't get transplanted in

time. This is all such guess work but I think all we

can do is make sure that we and our loved ones are

monitored on a consistant basis to know where we're

at.

Phil has had such good thorough doctors right down to

his Internist (who is taking a leave to do schooling

in specailization in sports medicine). Before he

leaves he is giving Phil a complete physical work up

with labs and all before turning him over to another

doctor he is recommeding for his " special " patients.

Kaiser still hasn't replaced Phil's two Hep doctors

but is now sending him directly to UCLA where he is on

the transplant list and even though he is stable is

staying. So we feel pretty good about things so far.

I always feel better when Phil gets all his testing

done because he is pushing himself a lot trying to get

our business going and with travel to China I get very

nervous.

I feel confident, after seeing what your mom is going

through that you will do the right thing. I forget

what part of the country do you live in because that

really makes a difference in timing of cadaver

transplants.

We just got a second letter from UCLA about living

donor transplants. We too feel that Phil isn't sick

enough to put someone else at risk or even himself but

who knows when the time comes. He doesn't have any

relatives, his son won't even talk to us and his

sister wouldn't be eligible-she has too many of her

own health problems and takes care of her mother. We

have one friend that has offered but we don't even

know if he'd be a match. He's huge so probably 1/4 of

his liver would be enough :-)

One of the most frustrating things about this disease

is it doesn't have any consistant course so that you

can plan.

Peg

__________________________________________________

[Guest guest]

Peg,

I'll start with a note of agreement! The worst part is that this disease is

not consistent! Not enough to plan a transplant, and often not even a day.

It is one roller-coaster that keeps changing its configuration! Phil and I,

and our families, are lucky that we are not currently ready for

transplantation, but it would be nice to have SOME idea of when the right

time is. I know there are certain symptoms that they look for and judge

quality of life, and that makes sense to me. However, I have had PSC for

better than 19 years now (since diagnosis) and am told repeatedly by my

internest, gastrointerologist and hepatologist, that I am very high risk for

cholangiocarcinoma due to the length of time I've had it. There is so much

debate as to when to transplant to avoid this and the bottom line is no one

knows. On bad days, when feeling down (which thankfully are few) I feel like

a sitting duck. Thankfully, most days I just feel fortunate that after 19

years I am doing this well.

I certainly can understand your worries about Phil and his traveling

oversees! But, as we have all learned, we have little (if any) control over

this disease. The best we can do is work with it to the best of our ability

and trust and pray that all will go well. I will be thinking of you and Phil

and hoping that he finds a live donor before the true need arises. I feel

very blessed to have my brother on stand-by. I am touched that he wants to

do this. He won't let me talk him out of it; to him the answer is clear. We

know that he is a blood type and size match, but he has not done the testing

necessary to make sure he is in good enough shape, etc. to endure such a

surgery. He doesn't have any major health issues, but hope it won't be

necessary for him to go through with the donation.

(I say if Phil's friend is large and should only need to donate 1/4 of his

liver, maybe they could make use of more tissue. -: Of course I am kidding.

I know that liver transplantation is not a laughing matter, but sometime you

have to laugh about it to stay sane! Wouldn't you agree?)

Well take care of you and yours and we'll talk again soon.