Transplant evaluation

[Guest guest]

Hello Everyone,

I don't always respond to the postings but I read them every few days. I

feel that being a member of this egroup is like getting another degree--I've

learned so much. I was diagnosed with PSC in 96 after an ERCP and elevated

LFTs. I've also had UC since 88. Just this summer, my bili went up to 5.4,

my Alk Phos was over 850, and I had the worst itching. My doctor at Kaiser

refereed me to UCSF for transplant evaluation. Well, my Billi has gone down

and LFTs dropped a little. My puritis is under control with cholestyramine

but I'm still going ahead with the transplant evaluation. All the doctors

seem to think that it is just a matter of time and we should get the paper

work behind us. (this just shows us what a different response people get

from different doctors).

Well, here is my question. I was given a 12 page questionnaire. There some

questions about drug and alcohol use that I'm not sure how to answer. (I

came of age in the 70s/80s and did a bit of experimentation) I want to be

honest with my doctors but I am afraid that I may say something that will

prevent me from being listed.

The alcohol questions are easy. I was only ever a social drinker. When I

was diagnosed with PSC 3 years ago, I stopped drinking completely.

The fact is that I have tried quite a few drugs in high school and college.

(Pot, mushrooms, LSD), I never did IV drugs or anything hard-core. After

college, the only thing I ever did (and still do) was to smoke pot

occasionally. I am curious as to wether they do drug/alcohol test during

this all-day evaluation appointment and continue to test you if you are

listed.

I hope my candor does not offend anyone (but I don't think my situation is

that unusual). I am afraid that my history sounds much worse than it is and

it will keep me from being listed. On the other hand I know that

hepatologists are used to dealing with patients with serious histories of

drug abuse and that my concerns may be laughable.

Any advice?

Adam

PS. My wife is pregnant after 3 years trying, and $25,000 in InVitro bills.

I thought that the little good news we have should be spred around. We are

expecting Aug 24. I just hope that I will be around to help my child grow up.

[Guest guest]

Adam

I don't have any answers to the questions you ask, but I am curious myself

as to the answers. If your experimentation keeps you from getting listed, my

husband never will. He did all the things you mentioned and even the speed

thing, IV but gave it up at age 19. However as for the pot, well he still

enjoys it and says he had to give up the alcohol so he'll just smoke. I also

hope that this doesn't keep you from getting listed but if so, I don't know

if he'll give it up. Will you? Any one out there with the answers?

Spring

[Guest guest]

Adam,

I don't think they will care much about what you did years ago.

The current drug use (pot) might possibly be an issue. I feel fairly

confident they will require you to stop as a requirement of being listed,

but maybe someone else would know for sure. In fact I just read on another

group that some transplant centers require routine drug and alcolhol blood

tests for their listed patients.

If you do get a transplant the immune supression drug therapy is extremely

sensitive to even things like grapefruits so there is no way they will want

to work around any drugs that aren't necessary.

Thanks, Roy T.

Re: Transplant evaluation

> Hello Everyone,

>

> I don't always respond to the postings but I read them every few days. I

> feel that being a member of this egroup is like getting another

degree--I've

> learned so much. I was diagnosed with PSC in 96 after an ERCP and

elevated

> LFTs. I've also had UC since 88. Just this summer, my bili went up to

5.4,

> my Alk Phos was over 850, and I had the worst itching. My doctor at

Kaiser

> refereed me to UCSF for transplant evaluation. Well, my Billi has gone

down

> and LFTs dropped a little. My puritis is under control with

cholestyramine

> but I'm still going ahead with the transplant evaluation. All the doctors

> seem to think that it is just a matter of time and we should get the paper

> work behind us. (this just shows us what a different response people get

> from different doctors).

>

> Well, here is my question. I was given a 12 page questionnaire. There

some

> questions about drug and alcohol use that I'm not sure how to answer. (I

> came of age in the 70s/80s and did a bit of experimentation) I want to be

> honest with my doctors but I am afraid that I may say something that will

> prevent me from being listed.

>

> The alcohol questions are easy. I was only ever a social drinker. When I

> was diagnosed with PSC 3 years ago, I stopped drinking completely.

>

> The fact is that I have tried quite a few drugs in high school and

college.

> (Pot, mushrooms, LSD), I never did IV drugs or anything hard-core. After

> college, the only thing I ever did (and still do) was to smoke pot

> occasionally. I am curious as to wether they do drug/alcohol test during

> this all-day evaluation appointment and continue to test you if you are

> listed.

>

> I hope my candor does not offend anyone (but I don't think my situation is

> that unusual). I am afraid that my history sounds much worse than it is

and

> it will keep me from being listed. On the other hand I know that

> hepatologists are used to dealing with patients with serious histories of

> drug abuse and that my concerns may be laughable.

>

> Any advice?

>

> Adam

>

> PS. My wife is pregnant after 3 years trying, and $25,000 in InVitro

bills.

> I thought that the little good news we have should be spred around. We

are

> expecting Aug 24. I just hope that I will be around to help my child grow

up.

>

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>

[Guest guest]

As I mentioned in one of my previous posts, it's current drug use that

most tx physicians are concerned about. They've seen every type of

addiction or abuse known to man. But their questions are looking at

possible complications during and after surgery.

For example, if someone is a current user/abuser of illicit drugs this

person may be more difficult to sedate, provide analgsia for, or may

suffer withdrawal or have seizures because they are no longer taking

their drug of choice in the immediate post op period. IV injection drug

users are more likely to have picked up nasty viral diseases: the

various forms of Hepatitis (we're up to about 10 now), HIV, diseases

that are usually sexually transmitted (syphillus, gonorrhea, clamydia).

These diseases make treating the patient more difficult and puts the

surgical and nursing staff at risk.

During most tx assessments, drug screens are done as are tests for the

more common viral diseases (Hepatitis screens, HIV). Only a positive HIV

test will prevent you from being listed. The reason for this is that

treatment with immunosuppressants post tx will speed the course of HIV.

Being honest about past use of drugs will probably not cause you to not

be listed or be accepted by a tx program. Current use may. However, as

mentioned above, if you're honest and want to quit and avoid the

potential risks during and after surgery, you may be able to arrange to

be considered by a tx centre. They would most likely require a number of

negative drug screening tests for you to be listed.

I guess it's up to you which you prefer the pleasure of an occasional

toke or the possibility of a few more years with a 'new' liver.

Personally, I know which one I would go for.

Aubrey

[Guest guest]

Aubrey,

A quick question for you: An ERCP was planned for my husband in the future,

with brushings for any signs of CA in the bile ducts. If that is detected,

am I correct that there is no treatment at all? Does that preclude you from

being listed? Is it possible that if it is early stage, they can move you up

to the top of the transplant list, or does that immediately eliminate you?

Since he just had an MRCP this week, I am hoping that there will be no

noticeable changes from the one he had last February, and that the plans for

the ERCP will be scrapped. Is there a point to look for this possible

cancer, if it is untreatable and if it does indeed render you ineligable for

transplant?

Hope this is not a stupid question.

Liz

[Guest guest]

Adam I hope you are right, you have probably done more research than we have,

a lot of what I know is from what I could find in books and what the Dr. told

us. Thanks for the correction, it sure gives me more hope.

Spring

[Guest guest]

Spring-

Everything I have been told and read indicates incidence of bile duct

cancer in PSC is around 10%. The absolute highest rate I have ever seen

noted is 30%. In any case, most PSC people will not get it. By the way,

welcome to the group !

H.

Re: Transplant evaluation

Liz,

It is my understanding, from what and I have been told, that in the

majority of cases PSC will develop into bile duct cancer. We were also told

that if this happens they will not consider him for a transplant, because

once the cancer is there, it is likely to spread and doing a transplant

would

be useless because it may have already spread to other areas or affected the

main hepatic duct. I hope this doesn't happen to anyone, but it did happen

to Walter Payton. Hope I didn't upset you with that tidbit, if I am

mistaken, please let me know.

Spring

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[Guest guest]

Hi Liz,

First off, there are no stupid questions. In fact, I have a question for

you. What do you mean by MRCP?

As for the planned ERCP. If they find evidence of cholangiocarcinoma,

they will do other tests to try to confirm this diagnosis; a CT or MRI,

blood test.

If cancer is confirmed, most programs will not list you for tx. The

reason is that this type of cancer is very quick to spread, very

difficult to treat especially is you've had a tx because the

immunosuppressants tend to make the cancer spread rapidly; and the last

reason is that this type of cancer tends to return in approximately 90%

of the cases in which it is found and treated. Not good news.

Treatment is possible for cholangiocarcinoma, but it 's not curable in

most cases. There are some cures apparently but they are few in number.

However, there a liver cancers that can be treated by tx. Solitary

Hepatomas have been successfully treated with tx or removal of the

tumour. Unfortunately for PSC sufferers we tend to get

cholangiocarcinoma with the corresponding serious problems.

Aubrey