RE: Children and PSC

[Guest guest]

Dear Abbie;

When my wife Judy and I joined this support group over 1 year ago

now, Judy spent a great deal of time going back through the archives.

She read all about Aubrey, a physician who was diagnosed with PSC

while in medical school. She read about his wonderful story of how he

fell in love, got married, practiced medicine, had a liver transplant

and recovered from the transplant to continue with his medical

practice. He devoted a great deal of time to answering everyone's

medical questions in this PSC support group for many years. He was a

wonderful resource for the group. He left the group several months

ago because of personal reasons, and he is very much missed by the

group. Aubrey always had some very good advice. In a nutshell, his

advice was simply .... live your life to the fullest and enjoy every

day and moment with your family and loved ones.

I think this is good advice. I would not discourage my son from

falling in love and getting married and having children even though

he has a potentially terminal liver disease. He should not be denied

these life joys.

And so to Stefan, I would say yes ... I do hope we all live long

enough to see our children grow up to live full lives .... this is

one of the joys of living ... and it is not morally or ethically

wrong to experience this joy.

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

> I believe that it is a very personal choice and we all should do

what is best for ourselves. With that, I propose the question. Is

it ethical, to build a family that is dependant on you when you know

you will be suffering from a terminal/chronic disease? I am not

questioning, if you already have a family, but if you don't, is it

morally okay to lead someone on by dating them, go on to marry them,

have children and then not be able to provide for them?

>

> For me, it is morally and ethically wrong for me to date and have

children. I do not know if I will be here in 5 years. I feel I have

to be able to provide for my husband and children both emotionally

and financially to make it ethically. I realize that we cannot

predict things like car accidents and future illnesses. I am not

referring to those things. I see the pain on my families' faces. I

already drug one guy through this. I am not willing to take anyone

else down with me.

>

> What do you think?

>

[Guest guest]

Re: Children and PSC

>

>

> Abbie,

> It's a tough choice. My wife and I are expecting our first child in

> 2 months, so the choice was made for me just before my diagnosis,

> and now it seems every night we talk about our uncertain financial

> future. I am in 1/2 through a demanding surgical residency. I have

> debt equal to a mortage, and no property no net worth all eggs based

> on a future career that now might be difficult to see happen. I'm

> trying to get life insurance so that if I go they'll have

> something, and trying (doubtful) to get disability insurance.

>

> But regarding your ex-boyfriend sounds like he was just the wrong

> guy at the wrong time. And IMHO depriving yourself of potential love

> is a mistake. Many couples chose not to have children anyway. And

> when I met my wife I was still getting chemo for colon cancer which

> I then survived. She helped me get throught it and she knew the

> emotional risk she was taking. I think we have to be aware of, and

> plan for, both the worst and the best outcomes. And I think you just

> haven't found the right guy, and shouldn't stop looking just because

> you _might_ die in the next five yrs. All the more reason to enjoy

> life now. If you find a guy and are honest with him and he's ok with

> that more power to him and you! And I know there is someone out

> there like that for YOU because there was for me when I was dying of

> colon cancer!!!!

>

> But you might be right about about children I don't know. Pain -

> both emotional and physical - sucks and I hear you about preventing

> suffering in others. But love is unfortuanately about sharing pain

> as well as pleasure. Yin and Yang. And suffering draws us closer

> too. Sometimes it draws us together. You hear of nurses marrying

> their patients all the time.

>

> I think it was Tee McCoy who told me that when she was young she

> concentrated on dying and as she got older she concentrated on

> living.

>

> -Stef, NY

>

Stef

Hello jd here.

Congrads to you and the miss' on your soon to be unspeakable joy! We

have a two year old boy (our first, and I'm 40 something!) and would

treasure a second. The PSC is a drag, because of the unknowns, and we are

currently also wrestling with the idea of a second child is the wise/

responsible thing to do. I can't imagine doing rotations and having the

double wammy going on (PSC & Chrohns). Some guys have all the fun.

Not to be to pie in the sky or philosophical, but isn't it interesting how

so many of us so easily kid ourselves into believeing we are all intitled to

our 85+ years, when in reality we are all but a breath from forever? I find

that major life shake ups remind me that " IT'S ALL GOOD " , a popular phase

quoted these days, perhaps paraphrased from the Good Book's passage " count

it all joy! "

As a still fairly newbee father to another, get ready for the time of

your life, because from that first moment forward, it's all good! Good to

here you have your ERCP out of the way. Here here to the Yin and Yang thing,

some of my favorite memories are those of tough times.

As for na Gods speed

Best

Your Southern Illinois Neighbor

jd

UC 1973, Jpouch 2000, Pouchitis 2001, PSC 10-04

ston City IL

krmpotich@...

[Guest guest]

Being the fiance of an absoluately wonderful man who has psc I can

tell you that I would not trade one second. He was honest with me

from the very beginning about his illness. I think we'd only been on

about 2 dates when he told me. He had one girlfriend leave him right

after he was diagnosed. I have no idea what the future holds and

honestly when I hear about what people like Shauna and her family

have gone through it scares me to death and makes me wonder if I'd

ever have the strength to go through something like that. But Chris

is worth the risk and I know that somehow we all find strength when

we need it. Now about children, he has a 5 year old daughter who was

2 when he was diagnosed. Children came up early in our relationship

because since I have none of my own I wanted to make it perfectly

clear that I wanted to have at least one child. At first was

unsure if he wanted to have more children because of the reasons you

mentioned in your post. But he's already doing better than he

expected. The doctor who diagnosed him told him he'd need a

transplant in 3 years. It's now been 3 years and he has no symptoms

and all of his tests are stable. His (and my) opinion is, you may as

well live your life while you have it because none of us know what's

in store for us. He is an amazing man. His courage and strength

amaze me. I know that, god forbid, when the time comes he will be

the one giving me strength and courage. That's how it's always been

with our relationship. I love him with all of my heart and would

never trade one second that we've shared or will share in the

future. I can't wait til April 2 when I walk down the isle and

become his wife. I don't know what the future holds but whatever is

in store, we will go through it together.

Bobbi

[Guest guest]

Abbie,

I met my husband after being diagnosed with psc. I was honest with him about the disease from the beginning. He was there during my many hospital stays, and knew/knows that it could get worse.

I've always known that I wanted children. After being diagnosed, I had some friends tell me that it was wrong of me to have children, when I may not be around for them. Then I was told that I probably couldn't get pregnant. When I thought that I couldn't have children, it made me realize how much I wanted them. The thought of never having a child left me feeling completely empty. My daughter, who is now almost 23 months, came as a surprise. During my pregnancy, I felt better than I had in years, and all of my liver enzymes were normal through my pregnancy. I now have an 8 month old son as well, and plan to have more children. Yes, it scares me that I may not be around for my children. But, I gave them life. Even if I were to die someday soon, my children will know that their mother loved them. I also wrote a letter to both of them shortly after they were born, and wrote my daughter another one on her first birthday. I plan to continue this on birthdays, and whether I'm here or not, they will get their letters when they become adults.

My question to you is... If you don't get married, or don't have children, what have you lived your life for? Not everyone has to have children, that should be a personal choice. I'm just saying that if you haven't shared your life with anyone, what have you achieved? You can't live your life afraid of dying. Yes, we all have a chronic, serious disease, but it doesn't define who we are.

Whether my time is up tomorrow, or in 60 years, I don't regret getting married or having my children. These are the greatest things that I have done in life.

Just my opinion.