marc/marci

[Guest guest]

i love marc's positive attitude and advice, but my calculations show that he has only had psc for less than 2 years. i know chris klug was in very good shape and positive and he needed a liver transplant, so don't be

disappointed if your bile ducts do eventually give out on you. it's no weakness on your part to be ill.See what's free at AOL.com.

[Guest guest]

-----Original

Message-----

i love marc's positive

attitude and advice i know chris klug was in very good shape and positive

and he needed a liver transplant, so don't be disappointed if your bile ducts

do eventually give out on you. it's no weakness

on your part to be ill.

I thought the post “sounded” a little funny too,

but I don’t believe for one minute he meant it the way it typed. A positive attitude is good thing. But, someone needing a transplant doesn’t

mean they weren’t positive thinkers or brought it on themselves by negative

thinking. It only means that the PSC

had progressed to the point of needing a new liver. Are there things we can do to prolong time

to transplant? Sure, eat well,

exercise, avoid alcohol, get a good nights sleep, stay

positive etc.

I wish I could find a study that says how many (%) would

progress to tx and how many wouldn’t, but all I’ve

found is vague generalities.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

___

[Guest guest]

noneenator@... wrote:

> i love marc's positive attitude and advice, but my calculations show

> that he has only had psc for less than 2 years. i know chris klug was

> in very good shape and positive and he needed a liver transplant, so

> don't be

> disappointed if your bile ducts do eventually give out on you. it's

> no weakness on your part to be ill.

It is often hard to find the proper balance of positivity to

acknowledgment of the difficulties associated with this disease. If you

try to be too positive it can end up sounding like those who have

problems dealing with the disease, or who's outcomes aren't good are

just not being positive and proactive enough (btw I know that neither

Marc nor anyone else was saying this, I'm just making a point about how

things can sometimes come across). On the other hand if you focus too

much on all the potential problems then it can all become overwhelming

and the disease can seem to take over your life.

That's why the group has chosen " whatever it takes " as it's motto: it

acknowledges that there are difficulties to be faced, but also asserts

that they can be faced.

athan (who's personal motto right know is " though I walk through

the valley of the shadow of death I will fear no evil " )

[Guest guest]

Technically, he has been DIAGNOSED for two years. Perhaps your

intuitive insight can provide the exact date he contracted PSC.

Why would you push your agenda of negativity on a case with which you

have completely NO knowledge (I know this because you are not on our

HEPA list)?

No one is promoting " illness is weak " , but vapid complaining and

failure to fight is! And where your Klug example is valid, I

query how many PSC patients who never require liver transplants write

books about it?

Bound by latest statistics, Marc will keep his liver, as will an

overwhelming majority of PSC readers here. The day the pessimists

accept this cold hard fact is the day that this yahoo group will

radically evolve forward!

Marci

Mrs. PSC Realist, Fighter and General Interesting Chic

Wife of Marc

>

> i love marc's positive attitude and advice, but my calculations show

that he

> has only had psc for less than 2 years. i know chris klug was in

very good

> shape and positive and he needed a liver transplant, so don't be

> disappointed if your bile ducts do eventually give out on you. it's

no

> weakness on your part to be ill.

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

[Guest guest]

Amen, Marc. My husband did get a transplant but, kept a positive attitude and always watched his diet and stayed fit for that purpose. The doctors told him that he was the healthiest looking person that needed a transplant. Up to the day he had transplant you couldn't tell he needed one by looking at him. He had transplant and was only in the SICU less than two days and was out of the hospital in four days. In SICU the nurses couldn't believe how well he was doing, he was up on his own less than twelve hours after surgery. He didn't need any blood transfusions during his transplant at all. It has been two years since transplant and still is doing great and watching his diet and tries to take

care of himself the best he can. Keep positive and wish you the best of luck. Tina

Re: marc/marci

>To those that seemed confused by my post let me clear things up foryou. I feel no shame or weak about contracting PSC, but I firmlybelieve that a positive attitude does have a profound effect on yourhealth. You need to look no further than Lance Armstrong about themind body connection. If you actually read my post carefully, I clearly stated that thereason I keep myself so fit and maintain a positive attitude is I wantmy body to be prepared. I ever need a transplant my body would bebetter suited to endure the surgery, and I additionally maintain mybest health so my body will be best prepared for other medicalchallenges. We all are only get older and medical issues are going tohappen. I will direct this next paragraph to Barb, because it was only a

monthago that Ivor and others refuted your statement that everyone with PSCwill need a liver transplant. I neglected to post then because enoughpeople countered your thesis with the statistics I quoted. I believethe data from several of the Hepatologist I have visited, and theother posters who quoted their Hepatologist are better informed thanyou, and they have practical experience to make those statements withconfidence. You should consider why is it that all of the responses that peoplequoted from their Hepatologist were similar, and the range that wasactually divulged was 20-40% will ever need a liver transplant. Itappears to me that from a myriad of credible sources (Hepatologist)that the majority of us will never need a liver transplant. If you believe you will die from PSC or are convinced you're destinedfor a liver transplant you will fulfill a self fulfilling prophecy,and I don't believe that those who get

a transplant or die from PSCdidn't have positive attitudes. Unfortunately it was a bad draw of thecards for them, but it is the defeatist negative people who will sealtheir own fate. What do you have to lose by being positive? Nothing! That was my point about the general herd of you who so quickly referto the 10 years statistics about transplants, and fail to mention thatit only applies to 30-40% of PSC patients. (I use the 30-40% rangebecause that is what I was personally told by Hepatologist)In my view you are propagating the negative and ignoring the positivestats. Why not present both sides of the picture, so you can promoteand foster hope instead of the gloom you perpetuate by presenting onlyhalf the picture. > -----Original Message-----> i love marc's positive attitude and advice i know chris klug was in> very good shape and positive and he needed a liver transplant, so don't> be disappointed

if your bile ducts do eventually give out on you. it's> no weakness on your part to be ill.> > I thought the post "sounded" a little funny too, but I don't believe for> one minute he meant it the way it typed. A positive attitude is good> thing. But, someone needing a transplant doesn't mean they weren't> positive thinkers or brought it on themselves by negative thinking. It> only means that the PSC had progressed to the point of needing a new> liver. Are there things we can do to prolong time to transplant? Sure,> eat well, exercise, avoid alcohol, get a good nights sleep, stay> positive etc. > > I wish I could find a study that says how many (%) would progress to tx> and how many wouldn't, but all I've found is vague generalities. > > Barb in Texas - Together in the Fight, Whatever it Takes!> Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas>

> ___>

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

>To those that seemed confused by my post let me clear things up for

you. I feel no shame, denial, or weakness about contracting PSC, but I

firmly

believe that a positive attitude does have a profound effect on your

health. You need to look no further than Lance Armstrong about the

mind body connection.

If you actually read my post carefully, I clearly stated that the

reason I keep myself so fit and maintain a positive attitude is

because I want

my body to be prepared. If I ever need a transplant my body would be

better suited to endure the surgery, and I additionally maintain my

fitness so my body will be best prepared for other medical

challenges. We all are only getting older and medical issues are bound to

happen. It's part of life.

I will direct this next paragraph to Barb, because it was only a month

ago that Ivor and others refuted your statement that everyone with PSC

will need a liver transplant. I neglected to post then because enough

people countered your thesis with the statistics I quoted. I believe

the data from several of the Hepatologist I have visited, and the

other posters who quoted their Hepatologist are better informed than

you. Hepatologist have practical experience to make those statements with

confidence.

You should consider why is it that all of the responses that people

quoted from their Hepatologist were similar, and the range that was

actually divulged was 20-40% will ever need a liver transplant. It

appears to me that from a myriad of credible sources (Hepatologist)

that the majority of us will never need a liver transplant.

If you believe you will die from PSC, or are convinced you're destined

for a liver transplant you will fulfill your self fulfilling prophecy.

I don't believe that those who get a transplant or die from PSC

didn't have positive attitudes. Unfortunately it was a bad draw of the

cards for them, but it is the defeatist negative people who will seal

their own fate. What do you have to lose by being positive? Nothing!

That was my point about the general herd of you who so quickly refer

to the 10 years statistics about transplants, and fail to mention that

it only applies to 30-40% of PSC patients. (I use the 30-40% range

because that is what I was personally told by Hepatologist)

In my view you are propagating the negative and ignoring the positive

stats. Why not present both sides of the picture, so you can promote

and foster hope instead of the gloom you perpetuate by presenting only

half the picture.

> -----Original Message-----

> i love marc's positive attitude and advice i know chris klug was in

> very good shape and positive and he needed a liver transplant, so don't

> be disappointed if your bile ducts do eventually give out on you. it's

> no weakness on your part to be ill.

>

> I thought the post " sounded " a little funny too, but I don't believe for

> one minute he meant it the way it typed. A positive attitude is good

> thing. But, someone needing a transplant doesn't mean they weren't

> positive thinkers or brought it on themselves by negative thinking. It

> only means that the PSC had progressed to the point of needing a new

> liver. Are there things we can do to prolong time to transplant? Sure,

> eat well, exercise, avoid alcohol, get a good nights sleep, stay

> positive etc.

>

> I wish I could find a study that says how many (%) would progress to tx

> and how many wouldn't, but all I've found is vague generalities.

>

> Barb in Texas - Together in the Fight, Whatever it Takes!

> Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

>

> ___

>

[Guest guest]

Marc,

Thanks for clarifying. I think that a large part of the reason that

many questioned your assertion that only a minority of PSC patients will

need transplants is that *their* hepatologists told them that most or

all would (I know that all the hepatologists I've seen seemed to share

that opinion). So it seems there is a divergence of opinion among

hepatologists, perhaps due to the fact that the disease usually

progresses slowly enough that it's really a hard call to make.

I guess the only thing that would clear it up would be a study designed

to figure it out, but it would have to last an awful long time! I mean

do you just assume that someone who's lived with psc for 30 years

without a transplant will never need one, or that they probably will

eventually? My personal guess is that there's a wide range of

variation in the rate of progression of PSC, and that if you gave it

long enough it would end up causing liver failure in almost everyone who

got it. But if you get the disease relatively late in life and/or yours

progresses very slowly, you may not need a transplant before you die of

other causes. But that's just a guess.

I think that the best conclusion we can come to is that some people will

need transplant, and some won't, but in either case you're better off

taking good care of yourself and keeping a positive mental outlook. For

my part, I do need a transplant; hopefully I will have it within the

next couple weeks, and I'm doing my best to take care of myself and keep

a positive mental attitude as I prepare for it. After all, for many of

us transplant is not a bad outcome, but a chance at a new life!

athan

[Guest guest]

Hi athan;

First let me wish you all the best in your upcoming transplant. Second,

I'd like to say that I agree with you about the different rates of

progression. The " statistics " about what percentage of PSC patients

will need a transplant is certainly not widely publicized. I was

actually surprised to hear Dr. Trotter report at the conference

in Denver last weekend that only about half of his PSC patients require

transplant (usually within about 10 years), and the other half do not

require transplants in their lifetime. This supports Marc/Marci's

statements, but it is tough to find this kind of information in the

literature.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

> Marc,

>

> Thanks for clarifying...in either case you're better off

> taking good care of yourself and keeping a positive mental outlook.

For my part, I do need a transplant; hopefully I will have it within

the next couple weeks, and I'm doing my best to take care of myself

and keep a positive mental attitude as I prepare for it. After all,

for many of us transplant is not a bad outcome, but a chance at a new

life!

>

> athan

athan -

My thoughts are with you! Your recent posts are awe-inspiring - that

you can keep up good thoughts for others and be so considerate and

sharing of your time and knowledge, while you are likely not feeling

even close to your best. Thank you so much for all you give to us.

And truly, best wishes for your gift of life to come soon!

Joanne

(, Ca., mom of , 16, PSC/UC 2-06; JRA 1998; just beginning

prep for colonoscopy on Friday)

[Guest guest]

Marc,

Statistics are just what they are…. statistics.

I am not trying to discourage you, I don't

even think this way myself, but I am just interpreting the statistics you gave

in another way.

According to your own statistics 30-40% of

PSC patients will need a transplant.

According to you 15% of PSC patients will

contract CCA and thus be banned from a transplant

This makes 45-55% of PSC patients that

will either die from CCA or need a transplant (or two or three).

Then there are the people that need a

transplant but die before they get one.

In other words, easily 50% of PSC patient

will either die before transplant or will receive a transplant.

This is using your statistics, without

knowing how correct or incorrect they are.

I am a fan of positive thinking (like the

Dr. Bernie Siegel therapy), but denial is not part of that. Positive thinking

is coping with what you need to cope with, keeping yourself informed, keeping

yourself as healthy as possible, letting the specialists work WITH you (instead

of ON you) and counting your blessings (not your sorrows).

In addition, you seem to think that

transplant is a bad thing. If I understand people that went through transplant

correctly, the suffering before transplant was worse than after. Positive

thinking as a PSC patient should include being happy that there is medication

available to relieve symptoms, that there are procedures to relieve symptoms,

that cures might be found before you will need a transplant and that, if need

be, transplant can fix you up.

Everyone has different ways of coping with

stress. I think you are being unnecessarily hard on Barb. Barb might paint a

gloomier picture than you like, but pessimists never fall as hard as optimists

do. One needs to be very careful with interpreting statistics. Even if you keep

the 30-40% in mind (which is obviously wrong), this does not mean that you won't

be in those 30-40%. If you create for yourself the false security that most

likely nothing will happen on the shaky basis of statistics, and something does

happen (heaven forbid), it will be very hard to think positive because you had

the " bad luck " of being in the 30-40% and not in the 60-70%. You

might get stuck in the " what did I do to deserve this " mode, which is

very destructive indeed.

Chaim Boermeester, Israel

___

[Guest guest]

Marci,

Pam meant no disrespect, I'm sure. Her wording was just meant to show

that eventually, many of us do need transplants and that's not a

failing on our parts. She wasn't saying that a positive attitude

wasn't a good thing. She meant that being positive might not be able

to protect you from having the disease progress. Although I battled

with depression over my illness at times, I have maintained a

positive attitude through my struggle and I have been living with a

transplanted liver for two years now. I was diagnosed in 1998, but I

had shown at least minor symptoms since 1990. I was transplanted in

2005. For me, the statistics held up - except the part about it

usually being a " male " disease!

One of the things that you will see is that many of the people who

need " support " for dealing with their PSC diagnosis are symptomatic,

so they're here posting with this group and trying to figure out how

to live with the very real horrors of this disease. The people who

are NOT symptomatic: they aren't here. They're off living their lives

and not writing books about it as you pointed out. So, I don't think

it is a reasonable expectation of this group to think that everyone

who is here should be thinking they won't need transplants since

they're usually the ones who are already on their way towards needing

one.

I hope this clarifies. Pam would never mean anything negative by what

she says. She has cirrhosis and is in end-stage liver disease with

horrible complications. As I'm sure anyone could understand, she

might be upset by the implication that not being positive enough got

her to where she is now.

Best wishes to you and Marc - may your positive outlook shield you

from what I personally know to be a devastating disease.

Deb in VA

PSC 1998, Gall bladder removed 1998, UC 1999, Birth of son 2000, ~12

ERCP's 1998-2005, Listed Ltx 2001, LDLTX 5/19/2005, Partial Portal

Vein Thrombosis 7/2005, 13 PTC's with drain placements/ replacements

9/2005-3/2006 for anastamosis strictures, 3 sinus surgeries 2006, 3

GI Bleeds from varicies caused by thrombosis 8/2006-2/2007.

[Guest guest]

>athan,

I wish you all the best with your pending transplant, and I agree that

there are different rates of progression. That was my point because in

some cases it progressives rapidily leading to a liver transplant, but

others it progresses very slowly and they will live a normal life span

with their orginal liver intact. You never know the course this

disease it seems to have a mind of its own. In this group alone you

have people who have had PSC for 10, 20, or 30 years.

athan I think I read you're going to Vandy for the transplant and

my Hepatologist is at Vandy as well. He is one of the doctors that I

quoted the statistics from of 30-40%.

Apparently, my whole point was misconstrued from my post, because all

I am saying is that only 30-40% of people will ever need a liver

transplant. This apparently has been substantiated from other people

in this thread, and I agree that there is a wide divergence of

opinions on the prognosis.

Just like there is a wide divergence on how to treat PSC either with

steroids, URSO, Remacaid, etc. All I know is from what I have been

told and read in this forum which all seems to collaborate what I have

been told.

Lastly, it escapes me that how some could interrupt that I believe if

you are destined for a liver transplant that you lacked a positive

attitude, because by no means was that my intention to project that

perception. I believe it takes incredible courage to prepare and

overcome that situation.

I firmly believe that when a newbie joins this group that to barrage

them with this 10 year to transplant statistic, and neglect to counter

that fact with some positive statistics is negligent. This will not

foster hope but only offer a one way avenue to either a liver

transplant or death. There are many other roads available to PSC

patients on the outcome of their disease.

> Marc,

>

> Thanks for clarifying. I think that a large part of the reason that

> many questioned your assertion that only a minority of PSC patients

will

> need transplants is that *their* hepatologists told them that most or

> all would (I know that all the hepatologists I've seen seemed to share

> that opinion). So it seems there is a divergence of opinion among

> hepatologists, perhaps due to the fact that the disease usually

> progresses slowly enough that it's really a hard call to make.

>

> I guess the only thing that would clear it up would be a study designed

> to figure it out, but it would have to last an awful long time! I mean

> do you just assume that someone who's lived with psc for 30 years

> without a transplant will never need one, or that they probably will

> eventually? My personal guess is that there's a wide range of

> variation in the rate of progression of PSC, and that if you gave it

> long enough it would end up causing liver failure in almost everyone

who

> got it. But if you get the disease relatively late in life and/or

yours

> progresses very slowly, you may not need a transplant before you die of

> other causes. But that's just a guess.

>

> I think that the best conclusion we can come to is that some people

will

> need transplant, and some won't, but in either case you're better off

> taking good care of yourself and keeping a positive mental outlook.

For

> my part, I do need a transplant; hopefully I will have it within the

> next couple weeks, and I'm doing my best to take care of myself and

keep

> a positive mental attitude as I prepare for it. After all, for many of

> us transplant is not a bad outcome, but a chance at a new life!

>

> athan

>

[Guest guest]

>Deb,

I understand your point and I feel for anyone who is heading towards a

liver transplant it is a courageous journey. I was just pointing out

that we should offer hope as well as the horrible facts.

I know when we originally joined it all seemed so bleak, but now over

2 years later and many consultations it isn't so bleak for all of us.

That doesn't disparage or demean the ones that need a transplant,

because my heart and prayers go out to them for their plight.

I was just trying to insert some hopeful statistics that I would have

found uplifting in the early days. I don't know my personal outcome

none of us do, but I do know a positive perspective enables me to

enjoy and live life more fully.

> Marci,

> Pam meant no disrespect, I'm sure. Her wording was just meant to show

> that eventually, many of us do need transplants and that's not a

> failing on our parts. She wasn't saying that a positive attitude

> wasn't a good thing. She meant that being positive might not be able

> to protect you from having the disease progress. Although I battled

> with depression over my illness at times, I have maintained a

> positive attitude through my struggle and I have been living with a

> transplanted liver for two years now. I was diagnosed in 1998, but I

> had shown at least minor symptoms since 1990. I was transplanted in

> 2005. For me, the statistics held up - except the part about it

> usually being a " male " disease!

>

> One of the things that you will see is that many of the people who

> need " support " for dealing with their PSC diagnosis are symptomatic,

> so they're here posting with this group and trying to figure out how

> to live with the very real horrors of this disease. The people who

> are NOT symptomatic: they aren't here. They're off living their lives

> and not writing books about it as you pointed out. So, I don't think

> it is a reasonable expectation of this group to think that everyone

> who is here should be thinking they won't need transplants since

> they're usually the ones who are already on their way towards needing

> one.

>

> I hope this clarifies. Pam would never mean anything negative by what

> she says. She has cirrhosis and is in end-stage liver disease with

> horrible complications. As I'm sure anyone could understand, she

> might be upset by the implication that not being positive enough got

> her to where she is now.

>

> Best wishes to you and Marc - may your positive outlook shield you

> from what I personally know to be a devastating disease.

>

> Deb in VA

>

> PSC 1998, Gall bladder removed 1998, UC 1999, Birth of son 2000, ~12

> ERCP's 1998-2005, Listed Ltx 2001, LDLTX 5/19/2005, Partial Portal

> Vein Thrombosis 7/2005, 13 PTC's with drain placements/ replacements

> 9/2005-3/2006 for anastamosis strictures, 3 sinus surgeries 2006, 3

> GI Bleeds from varicies caused by thrombosis 8/2006-2/2007.

>

[Guest guest]

>Chaim,

Your interpretation of the statistics is erroneous because they aren't

mutually exclusive, because someone could need a liver transplant and

have CC. These statistics overlap so you can't add them together to

increase the percentage that someone needs a liver transplant.

Also, if someone needs a transplant and dies before they get a new

liver still

falls into the orginal 30-40% range, so their outcome is irrelevant to

the statistics of what percent of PSC patients needs a transplant.

Therefore, my analysis of the statistics is accurate under the context

I utilized them, and I am fully aware on how to present them in an

accurate manner. I am not the only one in this forum who has been

quoted similar numbers.

I believe it is inaccurate when some in here states that everyone who

has PSC is destined for a liver transplant, because that isn't the

case and that has been my point. It all depends on the rate of

progression of the disease.

Once again, 60-70% of us will never need a liver transplant, and to

reuse a quote that I believe Ivor used from a Hepatologist in England

" most of us will die with PSC, not from PSC " .

Nowhere in my post did I ever state that a transplant was a bad thing.

My point has and always been that if you quote the 10 year statistic

to newbie's, but fail to mention the more positive statistics that

30-40% of people will need a liver transplant is not presenting the

entire picture.

Apparently, you and I have a different perception of life, I have and

always will remain an optimist, and if I end up in the percentage that

needs a liver transplant, I will remain an optimist. The statistics

are stacked in your favor for a positive outcome, and till my dieing

breath I will remain an optimist.

Where optimist may fall further if all else fails, a pessimist never

leaves the ground and they will never see the grandeur of hope.

> Marc,

>

>

>

> Statistics are just what they are.. statistics.

>

>

>

> I am not trying to discourage you, I don't even think this way

myself, but I

> am just interpreting the statistics you gave in another way.

>

>

>

> According to your own statistics 30-40% of PSC patients will need a

> transplant.

>

> According to you 15% of PSC patients will contract CCA and thus be

banned

> from a transplant

>

> This makes 45-55% of PSC patients that will either die from CCA or

need a

> transplant (or two or three).

>

> Then there are the people that need a transplant but die before they get

> one.

>

> In other words, easily 50% of PSC patient will either die before

transplant

> or will receive a transplant.

>

>

>

> This is using your statistics, without knowing how correct or

incorrect they

> are.

>

>

>

> I am a fan of positive thinking (like the Dr. Bernie Siegel

therapy), but

> denial is not part of that. Positive thinking is coping with what

you need

> to cope with, keeping yourself informed, keeping yourself as healthy as

> possible, letting the specialists work WITH you (instead of ON you) and

> counting your blessings (not your sorrows).

>

>

>

> In addition, you seem to think that transplant is a bad thing. If I

> understand people that went through transplant correctly, the suffering

> before transplant was worse than after. Positive thinking as a PSC

patient

> should include being happy that there is medication available to relieve

> symptoms, that there are procedures to relieve symptoms, that cures

might be

> found before you will need a transplant and that, if need be,

transplant can

> fix you up.

>

>

>

> Everyone has different ways of coping with stress. I think you are being

> unnecessarily hard on Barb. Barb might paint a gloomier picture than you

> like, but pessimists never fall as hard as optimists do. One needs to be

> very careful with interpreting statistics. Even if you keep the

30-40% in

> mind (which is obviously wrong), this does not mean that you won't be in

> those 30-40%. If you create for yourself the false security that

most likely

> nothing will happen on the shaky basis of statistics, and something does

> happen (heaven forbid), it will be very hard to think positive

because you

> had the " bad luck " of being in the 30-40% and not in the 60-70%. You

might

> get stuck in the " what did I do to deserve this " mode, which is very

> destructive indeed.

>

>

>

> Chaim Boermeester, Israel

>

> ___

>

[Guest guest]

Marc/Marci,

I understand what you're saying somewhat better now. I guess for me,

I knew from the severity of my symptoms, particularly after my

pregnancy toasted my liver, that I would need a liver transplant to

survive. Survive, I have. A liver transplant isn't the end of the

world. I've had tons of complications and I can still say that. Just

before transplant, I felt very desperate, wondering what new

complication was going to crop up next. It was hard to maintain a

positive attitude, but I found a way to do it most of the time.

I think emphasizing the " unknown, " the fact that medicine is

advancing everyday, and that we're all different are good ways to

educate newbies on dealing with PSC. Arguing about statistics doesn't

help anyone much. Numbers don't mean anything. For me, I almost

always fit into the " worst case scenario " with numbers which is why

we did our living donor transplant when we did, by choice, because I

had a high risk of developing cancer. I'm hoping that in the future,

I'll have better luck w/ the numbers. I specifically haven't looked

up how long transplanted livers have on average after they've

developed a clot in the branch of a portal vein or after changes have

occured in the interior bile ducts. I don't want to know.

I know whatever will happen will happen regardless of how I feel

about it. So, I live everyday focusing on the good things in my life

and trying to live like I have no tomorrows. See, I do know I've also

been very lucky. I have a husband who was self-less enough to donate

to me (and he got a bowel obstruction and an incisional hernia as a

thank you, but survived those). I beat the odds when I had my bleeds -

the outlook is usually very grim when the bleeding is in the

intestine - especially when you're on coumadin, but I got through

that. I have a wonderful family and support group of friends that

loves me - even when things are at their worst. Those are the things

newbies need to learn/hear from us. I think hearing from those of us

who walked in their shoes before shows them that they, too, can

handle what will come next, good or bad.

Just my 20 cents...

Deb in VA

PSC 1998, Gall bladder removed 1998, UC 1999, Birth of son 2000, ~12

ERCP's 1998-2005, Listed Ltx 2001, LDLTX 5/19/2005, Partial Portal

Vein Thrombosis 7/2005, 13 PTC's with drain placements/ replacements

9/2005-3/2006 for anastamosis strictures, 3 sinus surgeries 2006, 3

GI Bleeds from varicies caused by thrombosis 8/2006-2/2007.

[Guest guest]

..thanks deb for being the great person that you are and always have

been! i have counted on you personally many times and you never judge

me during the hard times and we celebrate together during the good.

this site means a lot to me and even though sometimes it gets a little

argumentative, overall i benefit from it in my fight.

pam

[Guest guest]

For the record, I like seeing the more positive statistics. I understand that the average time from diagnosis to transplant is 10-12 years, and that for some people they can live with PSC for 30 years w/out a transplant. But I hadn't seen the statistic that only 30-40% of people will need a transplant.

One thing I'd like to know is how many people who are listed for a liver transplant actually get a liver. I haven't seen that statistic anywhere yet. Or maybe I don't want to know.

Reply-To: To: Subject: Re: marc/marciDate: Thu, 19 Apr 2007 16:22:17 -0000

>Chaim,Your interpretation of the statistics is erroneous because they aren'tmutually exclusive, because someone could need a liver transplant andhave CC. These statistics overlap so you can't add them together toincrease the percentage that needs a liver transplant. Also, ifsomeone needs a transplant and dies before they get a new liver stillfalls into the orginal 30-40% range, so their outcome is irrelevant tothe statistics of what percent of PSC patients needs a transplant. Therefore, my analysis of the statistics is accurate under the contextI utilized them, and I am fully aware on how to present them in anaccurate manner. I am not the only one in this forum who has beenquoted similar numbers. I believe it is inaccurate when some in here states that everyone whohas PSC is destined for a liver transplant, because that isn't thecase and that has been my point. It all depends on the rate ofprogression of the disease. Once again, 60-70% of us will never need a liver transplant, and toreuse a quote that I believe Ivor used from a Hepatologist in England"most of us will die with PSC, not from PSC". Nowhere in my post did I ever state that a transplant was a bad thing.My point has and always been that if you quote the 10 year statisticto newbie's, but fail to mention the more positive statistics that30-40% of people will need a liver transplant is not presenting theentire picture. Apparently, you and I have a different perception of life, I have andalways will remain an optimist, and if I end up in the percentage thatneeds a liver transplant, I will remain an optimist. The statisticsare stacked in your favor for a positive outcome, and till my dieingbreath I will remain an optimist. Where optimist may fall further if all else fails, a pessimist neverleaves the ground and they will never see the grandeur of hope. > Marc,> > > > Statistics are just what they are.. statistics.> > > > I am not trying to discourage you, I don't even think this waymyself, but I> am just interpreting the statistics you gave in another way.> > > > According to your own statistics 30-40% of PSC patients will need a> transplant.> > According to you 15% of PSC patients will contract CCA and thus bebanned> from a transplant> > This makes 45-55% of PSC patients that will either die from CCA orneed a> transplant (or two or three).> > Then there are the people that need a transplant but die before they get> one.> > In other words, easily 50% of PSC patient will either die beforetransplant> or will receive a transplant.> > > > This is using your statistics, without knowing how correct orincorrect they> are.> > > > I am a fan of positive thinking (like the Dr. Bernie Siegeltherapy), but> denial is not part of that. Positive thinking is coping with whatyou need> to cope with, keeping yourself informed, keeping yourself as healthy as> possible, letting the specialists work WITH you (instead of ON you) and> counting your blessings (not your sorrows).> > > > In addition, you seem to think that transplant is a bad thing. If I> understand people that went through transplant correctly, the suffering> before transplant was worse than after. Positive thinking as a PSCpatient> should include being happy that there is medication available to relieve> symptoms, that there are procedures to relieve symptoms, that curesmight be> found before you will need a transplant and that, if need be,transplant can> fix you up.> > > > Everyone has different ways of coping with stress. I think you are being> unnecessarily hard on Barb. Barb might paint a gloomier picture than you> like, but pessimists never fall as hard as optimists do. One needs to be> very careful with interpreting statistics. Even if you keep the30-40% in> mind (which is obviously wrong), this does not mean that you won't be in> those 30-40%. If you create for yourself the false security thatmost likely> nothing will happen on the shaky basis of statistics, and something does> happen (heaven forbid), it will be very hard to think positivebecause you> had the "bad luck" of being in the 30-40% and not in the 60-70%. Youmight> get stuck in the "what did I do to deserve this" mode, which is very> destructive indeed.> > > > Chaim Boermeester, Israel> > ___>

Interest Rates NEAR 39yr LOWS! $430,000 Mortgage for $1,299/mo - Calculate new payment

[Guest guest]

Marc, You are probably right when you say that not everyone will need a transplant. PSC is an individual disease, and PSC will progress at different speeds in different people. I believe that PSC can even progress faster and then slower again in the same individual. The generally accepted statistic is that ON AVERAGE people will need a transplant after a decade or so. The problem is with an average that if someone needs a transplant after a year and someone else after 19 years, the average of 10 years doesn't tell you too much. IF your statistics about 30 or 40% needing a transplant are right, (and no-one knows, not even your hepatologist because not enough research has been done on the subject) that would be in conflict with the generally accepted average of 10 years, since most people are diagnosed when they are between 30 and 40 years old. Your hepatologist can only speak about his own

experience with his patients or what he feels is the general perception among his peers. Actual scientific research has not been done in the US, and not on a global level either (if Barb can't find it, it doesn't exist). It sounds somewhat strange to me that the generally accepted figure of 10 years should be incorrect. The people on this forum that need their transplant after 10 years or so, greatly outnumber the people that have gone without a transplant for 15 years or more. When you are saying that only 30-40 % of PSC patients will ever need a transplant, you are saying that the people that are diagnosed around 40 (which is the majority), will not need a transplant for 35 years and that that is the case for 60-70% of the PSC patients. This is definately not the case on this forum. In addition, transplant is not the beginning of trouble. Usually problems start way before you get to your

transplant. If your 30-40% needing a transplant are correct, that does not mean that the other 60-70% will have a ball. I read about symptoms on this forum that sound worse than receiving a transplant. Pruritis, jaundice, fatigue, URQ pain, infections, personality changes, forgetfulness. I have never experienced any of them yet, but it doesn't sound like fun to me. Transplant might be a relief after some of those kick in. In hebrew there is a saying: A pessimist is an optimist with experience. ;-) Chaim Boermeester, Israel

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

>The problem is with an average that if someone needs a >transplant

after a year and someone else after 19 years, the >average of 10 years

doesn't tell you too much.

The standard deviation is the problem here. It's not a nice tight bell

curve. The deviation makes the average almost meaningless. Also, to be

picky, a number of the people who have CCA may need a transplant

because the cancer is blocking ducts, even though their liver might

have lasted years without it. A blocked duct can cause atrophy

rapidly, according to one of my doctors. When they tell me not to

worry because CCA is usually found in people with advanced disease, I

see a fallacy. CCA is so hard to detect that it often is not

uncommonly found in the final stages of the transplant workup,

sometimes in the OR.

In conclusion, I would just say what one of the doctors said to me:

PSC is like walking toward a cliff blindfolded. You don't know where

the edge is- you may not get there before you go some other way. But

it makes sense to stay on top of the disease, like dilating strictures

before they kill part of your liver, and taking meds that have

positive associations (since nothing's proven to postpone ESLD for

us). Live your life the way you want to live it. For me, it makes

sense to live a sane life now, instead of being ambitious, because for

me a sane life is spending time with my family NOW. That way, if I go

in 4 years or 40 years, I will know I spent my time the way I thought

best, and left something worthwhile behind. I interviewed yesterday

for a job at half my current pay, but in my town, not a 70 min drive

each way over snowy hills.

> In hebrew there is a saying: A pessimist is an optimist with

experience. ;-)

>

> Chaim Boermeester, Israel

Funny, I thought that was an American saying!

Martha (MA)

[Guest guest]

Dear Marci:

I sense an extreme amount of anger in your posting. Certainly facing uncertainty from your spouse's dx of PSC is not an easy experience. I will always be grateful for the love and support of my husband during the dx, later episodes of cholangitis and ultimately my transplant. It was not easy for him to juggle my illness in the later stages and our usual home reponsibilities. Negative thinking did not cause my disease to progress nor did lack of follow up, medications or good health practices. Unfortunately this disease runs a variable course and I feel lucky that a treatment existed in the form of transplant when I needed it. Sixteen months post transplant, my husband and I have resumed our priority job, raising our two teenagers. I've returned to my full-time job and I'm carrying six credits of senior level college credits.(All activites I can do thanks to my donor and his family) I hope your husband remains healthy but don't look at a transplant as a failure or a traumatic ending to your life together. I feel much better and this gift improved my personal and family life dramatically. Unfortunately, this anger directed at those of us who have had transplants is both inappropriate and insulting. I wish you the ability to come to terms with this change in your life.

Best Wishes, April

Exercise your brain! Try Flexicon.