RE: Re: Alcohol - What is the truth about it and PSC???

[Guest guest]

Ahhh – but I doubt that a couple of glasses of wine a month

would have that affect…

By the way – on the brighter side. Look at what greeted me after

I went to the grocery this evening! I never saw a sky like this before!

From:

[mailto: ] On Behalf

Of

There is some evidence that alcohol consumption

in PSC patients

increases risk for cholangiocarcinoma:

[Guest guest]

,

I think they mean, that once you are

listed for a transplant, you are to keep a very strict regiment and follow

doctors orders.

Before that, I don't think that an

occasional glass of wine will kill you. But… If your doctor tells you not

to drink alcohol and you do it anyway, and he finds out, it might be detrimental

to your chances of getting your transplant. Transplant teams only like people

who follow their doctor instructions. If you can't follow simple instructions

like no alcohol, what will happen when you need to take anti-rejection drugs

etc? Since organs are so scarce, transplant teams don't want to waste livers on

people who might destroy it because they don't follow instructions. The same is

true for people with drug addictions and even recreational drug use. There was

a bad example of this a while ago of someone who received medicinal Marijuana

in CA, and was not allowed a transplant in NV because of it (even though it was

prescribed by a doctor).

Regards,

CHaim

From: [mailto: ] On Behalf Of archiebanker

Sent: Sunday, February 15, 2009

15:37

To:

Subject: Re: Alcohol

- What is the truth about it and PSC???

Thanks everyone for all the great responses. Really

appreciate it. I have read once or twice on

this site people mentioning that they can't have a transplant if they have

alcohol. Is that ever

or is that when you are on a regiment before tx? I am pretty sure that my

occasional glass of

wine will become obsolete if and when I progress further (although with the

promising new

drugs coming out, i'm hoping and praying it never gets to that!).

Hope you and your families are all well.

-

[Guest guest]

,

I think they mean, that once you are

listed for a transplant, you are to keep a very strict regiment and follow

doctors orders.

Before that, I don't think that an

occasional glass of wine will kill you. But… If your doctor tells you not

to drink alcohol and you do it anyway, and he finds out, it might be detrimental

to your chances of getting your transplant. Transplant teams only like people

who follow their doctor instructions. If you can't follow simple instructions

like no alcohol, what will happen when you need to take anti-rejection drugs

etc? Since organs are so scarce, transplant teams don't want to waste livers on

people who might destroy it because they don't follow instructions. The same is

true for people with drug addictions and even recreational drug use. There was

a bad example of this a while ago of someone who received medicinal Marijuana

in CA, and was not allowed a transplant in NV because of it (even though it was

prescribed by a doctor).

Regards,

CHaim

From: [mailto: ] On Behalf Of archiebanker

Sent: Sunday, February 15, 2009

15:37

To:

Subject: Re: Alcohol

- What is the truth about it and PSC???

Thanks everyone for all the great responses. Really

appreciate it. I have read once or twice on

this site people mentioning that they can't have a transplant if they have

alcohol. Is that ever

or is that when you are on a regiment before tx? I am pretty sure that my

occasional glass of

wine will become obsolete if and when I progress further (although with the

promising new

drugs coming out, i'm hoping and praying it never gets to that!).

Hope you and your families are all well.

-

[Guest guest]

,

I think they mean, that once you are

listed for a transplant, you are to keep a very strict regiment and follow

doctors orders.

Before that, I don't think that an

occasional glass of wine will kill you. But… If your doctor tells you not

to drink alcohol and you do it anyway, and he finds out, it might be detrimental

to your chances of getting your transplant. Transplant teams only like people

who follow their doctor instructions. If you can't follow simple instructions

like no alcohol, what will happen when you need to take anti-rejection drugs

etc? Since organs are so scarce, transplant teams don't want to waste livers on

people who might destroy it because they don't follow instructions. The same is

true for people with drug addictions and even recreational drug use. There was

a bad example of this a while ago of someone who received medicinal Marijuana

in CA, and was not allowed a transplant in NV because of it (even though it was

prescribed by a doctor).

Regards,

CHaim

From: [mailto: ] On Behalf Of archiebanker

Sent: Sunday, February 15, 2009

15:37

To:

Subject: Re: Alcohol

- What is the truth about it and PSC???

Thanks everyone for all the great responses. Really

appreciate it. I have read once or twice on

this site people mentioning that they can't have a transplant if they have

alcohol. Is that ever

or is that when you are on a regiment before tx? I am pretty sure that my

occasional glass of

wine will become obsolete if and when I progress further (although with the

promising new

drugs coming out, i'm hoping and praying it never gets to that!).

Hope you and your families are all well.

-

[Guest guest]

THAT makes too much sense –

would never happen in the US.

The only time you have to

sign a no alcohol pact is if you're on the list because of self

inflicted alcoholic liver disease.

[Guest guest]

THAT makes too much sense –

would never happen in the US.

The only time you have to

sign a no alcohol pact is if you're on the list because of self

inflicted alcoholic liver disease.

[Guest guest]

THAT makes too much sense –

would never happen in the US.

The only time you have to

sign a no alcohol pact is if you're on the list because of self

inflicted alcoholic liver disease.

[Guest guest]

This probably goes without saying, but I figure it's better to say it and be

redundant or idiotic than to not mention it at all. As far as alcohol and PSC

goes, one other thing to consider it the medications that your doctors have you

on. For me, some of my medications are narcotics, so mixing them with alcohol

is a big no-go...even though there are days where I'm sorely tempted....

Sandi in VA

[Guest guest]

This probably goes without saying, but I figure it's better to say it and be

redundant or idiotic than to not mention it at all. As far as alcohol and PSC

goes, one other thing to consider it the medications that your doctors have you

on. For me, some of my medications are narcotics, so mixing them with alcohol

is a big no-go...even though there are days where I'm sorely tempted....

Sandi in VA

[Guest guest]

This probably goes without saying, but I figure it's better to say it and be

redundant or idiotic than to not mention it at all. As far as alcohol and PSC

goes, one other thing to consider it the medications that your doctors have you

on. For me, some of my medications are narcotics, so mixing them with alcohol

is a big no-go...even though there are days where I'm sorely tempted....

Sandi in VA

[Guest guest]

Right – me too! That’s what I was saying – it just doesn’t seem

right but I’ll follow the rules anyway.

==============

Anita, Not so, I am listed for PSC never was a

drinker, still had to

sign a contract with my transplant center no alcohol, smoking, illegal

drugs (never smoker or drug user either).

[Guest guest]

Right – me too! That’s what I was saying – it just doesn’t seem

right but I’ll follow the rules anyway.

==============

Anita, Not so, I am listed for PSC never was a

drinker, still had to

sign a contract with my transplant center no alcohol, smoking, illegal

drugs (never smoker or drug user either).

[Guest guest]

Since I have ardently read almost every post that comes in trying to find just a glimmer of hope for my husband, I do not reply to most because we did not have the "wait and see" experience that most of you have or had. When they found my husband had PSC , he had only had the itching for about 2 weeks, indigestion for about a month and jaundice that started on his skin ever so light and within 3 weeks he was as yellow as an arm and hammer baking soda box. They thought that he had a "stone in his bile duct" because it came on so quickly. They scheduled its removal immediately. On May 3rd 2007, we entered the hospital for an outpatient procedure. Although the procedure to remove his bile ducts below the liver and his gall bladder seemed to go as planned, complications set in and he went into complete renal and liver failure, had a stroke and bled out every eight days for over 6 months. He had

over 275 units of blood. They found the source when his hepatic artery ruptured. He was in ICU for over 7 1/2 months came home the day after Thanksgiving November of 2007 and has been in the hospital for at least a week every month since then with infections. He gets "MRBE" multiple resistant bacterial ecoli in his blood stream. This last event was a week and a half ago, he had to go back to ICU for three days. I have brought him home on Intervenes antibiotics and a central line.

Now, what I am getting at, my husband is clearly in end stage liver disease. We jokingly kid that he looks like sponge bob square pants. But, up until now, the doctors told him absolutely no alcohol of any form...even mouth wash. They said that the alcohol could burn and irritate the bile ducts. Now, since we are on our last leg of our journey, they have told him he could have one glass of wine at night. He needs to enjoy what he wants.....

My husband was 64 when this appeared.....he was turkey hunting with our grandsons, tearing up the hills in the Talihina Forests in SE Oklahoma on thier 4 wheelers. He was strong.6'2..295lbs..owned his own construction business. ...... This disease is awful.

Bobbie Gray

Subject: RE: Re: Alcohol - What is the truth about it and PSC???To: Date: Sunday, February 15, 2009, 10:49 PM

This probably goes without saying, but I figure it's better to say it and be redundant or idiotic than to not mention it at all. As far as alcohol and PSC goes, one other thing to consider it the medications that your doctors have you on. For me, some of my medications are narcotics, so mixing them with alcohol is a big no-go...even though there are days where I'm sorely tempted.... :)Sandi in VA

[Guest guest]

Whether an individual is heathy, some-what healthy or has liver disease - alcohol still destroys liver cells. One would argue that they did not seem affected when they had liver disease prior to the actual dx, and probably rightly so. Alcohol still destroys liver cells. Yes, even the the most healthiest person.....however, healthy livers are able to regenerate liver cells and it happens to the point that 'normal healthy livers' and the person who it belongs too, just doesn't notice anything - except for the occassional hang over.

For compromised livers, alcohol still destroys liver cells, but since it is a compromised liver that has a disease that is also destroying liver cells...you, generally speaking, or should I say ME, would not 2 forces gobbling up my good liver cells.

Having said all that.....if I was told I was and end-stage and I should just enjoy my remaining time.....(if I were a drinker), I would certainly add that back to my lifestyle.

Because my parents did not want guys taking advantage of me when I started dating, they made me start drinking at home when I was 16...their theory was that I would build up a tolerance and it would be harder for a guy to get me drunk and take advantage...........

It is probably because of that, that I developed a distaste for alcohol of any kind, not even mouthwash. I am fortunate now that I think about it because I am not faced with 'wanting to drink' and "being told I can't drink", but truth is, if I were told to go enjoy my life, I might toast once with a bubbly!