RE: Questions based on 's response to New Member

[Guest guest]

-----Original

Message-----

I'm wondering about

the quote " You're more likely to die with PSC than from PSC " . How

many people do die from PSC? Is there a

percentage? What the average life span? And if death isn't the big fear, than

is it the pain? The suffering? The experience of transplant?

Like Arlene, I'm trying to formulate a vision of what to expect. Also, you

write, " we're very rough on our caregivers, bless them! "

Why do you write that? What should my husband be expecting?? Is it the worry?

Symptoms that make us unable to function normally? Does

PSC affect our mood? I know there are others on this board who are caregivers -

what is your experience?

Hi Ruth,

Your questions make me really mad! Not at you, but at your doctor for not

giving you more information. That’s

why we work so hard to get the word out about PSC Partners, the literature

site, our brochures and hold conferences each year. No patient should come away from

diagnosis with the type of fear you’re expressing!

No there aren’t any percentages on how many die from

PSC, because *IF*

and when your liver gives out, you can get a new one. People with PSC die every year –

from old age, car accidents, heart attacks, gun shot wounds, you name it people

die from it, but PSC *IS NOT* an

automatic death sentence. Your

doctor should have told you that.

We know lots of people who have had PSC for years –

many years (20-30) – and are still doing great. You won’t believe how many people continue

on with their lives with no symptoms at all! My son never had a cholangitis attack and

never had pain. For many, many

people transplant surgery is just like any other surgery, they are out of the

hospital in a week and after the usual 6 weeks back to work. Even people who have had more than one

transplant!

Do complications happen? Yes, as it does with any surgery. Do people die while listed? Yes, but in the 9 years I’ve been

here no one with PSC has died because there wasn’t a liver for them. Might you get cancer? Yes, but everyday we learn more about the

disease and what to watch for. Doctors

are keenly aware now and strike at cancer with amazing force.

A woman who had PBC got her transplant around the time Ken did. Fern was 72 and one day about 3 weeks

after surgery she fell and broke her hip.

I wish I could show you her picture from the transplant reunion. She looks GREAT and is back to her old

self. That’s how it works for

many people.

The questions for caregivers – I’m one. Yup you bet it can be hard, because we want

our loved ones to have nothing in their lives, but a bed of roses and to always

walk on gold paved streets. I hated

it when my kids got colds. I hate

it when the dog pukes! But that’s

not a burden and your husband should expect you to be your normal self for a

very long time to come! If

anything, you will likely grow closer to each other. You’ll be fine, expect the best,

and ignore the rest.

Barb in Texas - Together in the Fight.... Whatever it

Takes!

[Guest guest]

>

> Also, you write, " we're very rough on our caregivers, bless them! "

> Why do you write that? What should my husband be expecting?? Is it

> the worry? Symptoms that make us unable to function normally? Does

> PSC affect our mood?

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

Hi Ruth!

I can't speak for what Arne had in mind, but I'll gladly toss in my two cents

worth!

Generally speaking, regardless of the disease or condition, it is extremely

tough to be a

caregiver. It leaves you drained, both physically and emotionally. It's

agonizing to watch

someone you dearly love suffer with the symptoms of any disease. It's even

worse when

you add hepatic encephalopathy (HE) to the mix. Any incurable disease has the

potential

to lead to depression, frustration, anger, etc., but when you add HE you also

get a patient

who can't figure out what they're doing or why, who doesn't remember what they

were told

2 minutes ago and certainly not 2 days ago.

When my father was dying of lung cancer, I moved back in with my folks to help

care for

him. Let me tell you that it was far, far harder to watch him slowly die than

it is for me to

deal with my own PSC. Because of that I know how very difficult it is for my

husband to

watch me as this disease progresses. A caretaker often has such a feeling of

helplessness

and that certainly takes a toll. When you then add depression and anger to the

mix, you

can get a very wearing situation. This is, I think, particularly true when it's

your spouse

who is ill .... the one person you count on and lean on for support and

encouragement is

now so terribly sick and you're afraid to lean on them. As the patient, I've

been careful to

let my hubby know that it's OK to lean on me; I'm still there for him

emotionally and

spiritually, even though I'm often not up to much physically.

The one thing I'm sure of -- if you can keep a terrific sense of humor, and a

strong faith

in God, you can cope with anything!!!

Regards,

Carolyn B. in SC

[Guest guest]

>

> Also, you write, " we're very rough on our caregivers, bless them! "

> Why do you write that? What should my husband be expecting?? Is it

> the worry? Symptoms that make us unable to function normally? Does

> PSC affect our mood?

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

Hi Ruth!

I can't speak for what Arne had in mind, but I'll gladly toss in my two cents

worth!

Generally speaking, regardless of the disease or condition, it is extremely

tough to be a

caregiver. It leaves you drained, both physically and emotionally. It's

agonizing to watch

someone you dearly love suffer with the symptoms of any disease. It's even

worse when

you add hepatic encephalopathy (HE) to the mix. Any incurable disease has the

potential

to lead to depression, frustration, anger, etc., but when you add HE you also

get a patient

who can't figure out what they're doing or why, who doesn't remember what they

were told

2 minutes ago and certainly not 2 days ago.

When my father was dying of lung cancer, I moved back in with my folks to help

care for

him. Let me tell you that it was far, far harder to watch him slowly die than

it is for me to

deal with my own PSC. Because of that I know how very difficult it is for my

husband to

watch me as this disease progresses. A caretaker often has such a feeling of

helplessness

and that certainly takes a toll. When you then add depression and anger to the

mix, you

can get a very wearing situation. This is, I think, particularly true when it's

your spouse

who is ill .... the one person you count on and lean on for support and

encouragement is

now so terribly sick and you're afraid to lean on them. As the patient, I've

been careful to

let my hubby know that it's OK to lean on me; I'm still there for him

emotionally and

spiritually, even though I'm often not up to much physically.

The one thing I'm sure of -- if you can keep a terrific sense of humor, and a

strong faith

in God, you can cope with anything!!!

Regards,

Carolyn B. in SC

[Guest guest]

WOW Barb that was a great answer, I think I will print that out!!

Bettyann (SC)

[Guest guest]

WOW Barb that was a great answer, I think I will print that out!!

Bettyann (SC)

[Guest guest]

WOW Barb that was a great answer, I think I will print that out!!

Bettyann (SC)

[Guest guest]

Yes, Dr. Lindor is, how shall I put it, a man of few words...

Thank you SO much for these answers, they bring tears of gratitude to

my eyes.

I do so want to protect my husband and my children...

Ruth

> Hi Ruth,

> Your questions make me really mad! Not at you, but at your doctor for

> not giving you more information.

[Guest guest]

Yes, Dr. Lindor is, how shall I put it, a man of few words...

Thank you SO much for these answers, they bring tears of gratitude to

my eyes.

I do so want to protect my husband and my children...

Ruth

> Hi Ruth,

> Your questions make me really mad! Not at you, but at your doctor for

> not giving you more information.

[Guest guest]

-----Original

Message-----

Yes, Dr. Lindor is, how shall I put it, a man of few words...

All

the really good doctors seem to be that

way. All brains not much people

skills. Honestly no one should

leave a doctors office in fear. If

there is one thing (OK there are a bunch of things) I wish I could change it’s

that. And of course I’d like

to smack around the doctor who gave us a wrong diagnosis – twice!

Barb in Texas - Together in the Fight.... Whatever it

Takes!

[Guest guest]

-----Original

Message-----

Yes, Dr. Lindor is, how shall I put it, a man of few words...

All

the really good doctors seem to be that

way. All brains not much people

skills. Honestly no one should

leave a doctors office in fear. If

there is one thing (OK there are a bunch of things) I wish I could change it’s

that. And of course I’d like

to smack around the doctor who gave us a wrong diagnosis – twice!

Barb in Texas - Together in the Fight.... Whatever it

Takes!

[Guest guest]

-----Original

Message-----

Yes, Dr. Lindor is, how shall I put it, a man of few words...

All

the really good doctors seem to be that

way. All brains not much people

skills. Honestly no one should

leave a doctors office in fear. If

there is one thing (OK there are a bunch of things) I wish I could change it’s

that. And of course I’d like

to smack around the doctor who gave us a wrong diagnosis – twice!

Barb in Texas - Together in the Fight.... Whatever it

Takes!

[Guest guest]

Ruth Blatt wrote:

> And if death isn't the big fear, than is it the pain? The suffering?

> The experience of transplant?

>

As someone who's had a transplant, and can look back on my experience I

can look back and see what (so far) are the biggest risks I've faced.

There was a risk of death, but that's universal. We're all at risk for

it, and PSC doesn't (imo) increase it enough to make it a much larger

worry than it should be for most people. What I mean is that we all

should face up to the fact that we're going to die sometime and we

really don't know when, so we need to be prepared (and I don't mean just

having you will written!). If PSC gives you the extra impetus to do

that then it's benefited you.

As far as pain goes, I've personally had very little serious pain. Even

the transplant wasn't particularly painful. Discomfort, and fatigue

were much bigger issues for me than pain ever was, although I know that

some others have different experiences with this.

As far as the transplant goes, that was one of the most positive, happy,

joyful experiences of my life so far. Even while I was still recovering

in the hospital I felt so much better than I had in many years. A year

later I'm still riding on that high even though I've had some

difficulties recently. I thank God and the donor family every day.

So what should you fear? Probably none of the above (although that's

easier said than done). We don't know what our experience will be like,

so we don't know what to fear. A better approach is to have an idea of

what can happen, what you need to prepare for, and then hope and plan to

have the best outcome possible.

athan

[Guest guest]

-----Original

Message-----

WOW Barb that was a great answer, I think I will print that out!!

Thank you very much, but please

don’t, everyone looks at and experiences things

differently. It’s just if I

had known what I know now, our life over the last 8 years would have been much

different. That’s what I want

people to know, that’s what I hope you take away from this discussion. Things aren’t as bad as you’ve

heard and I don’t think I’m asking you to put on rose colored

glasses either.

When Ken was first diagnosed, doctors back then (1999)

said men couldn’t father children if they had PSC. athan blew that off the roof with

two beautiful kids (check out photo section.) Then we heard women couldn’t carry

babies to term. (who started this group) knocked that out of the

ball park with her four children (ditto photo section.) 10 years was all you could ever expect if

you had PSC, many of those doctors are dead now, but the PSC patients are still

alive, well and working (most without a transplant!) The way doctors treat and the way

patients live has changed so much just over the 8 years we’ve dealt with

it. I can’t begin to imagine how

different things will be for future group members.

Ken has had every known complication and some new ones

too. We thought we would lose him

several times, it was and is hard, very hard now. But ya know what? He just IM’d me and told me to get

off the computer, he wants to go into town, so I

will. Enjoy your weekend!

Barb in Texas - Together in the Fight.... Whatever it

Takes!

,___