Re: New Research??

[Guest guest]

Dear Nick,

I cried as I read what you have written here. You have a right to your

feelings, and they are very valid. Not one of us in life is like any other,

and we each have our own way of dealing with things that come our way in

life. I hope and pray that you do find your soul mate and live a very

wonderfully productive life. I believe that with a positive attitude you

can do that.

I can also relate to many of the things you said, because my husband has the

same feelings. He and I just had a very long discussion last evening about

his not wanting to have a liver transplant. He is 41 years old, and we have

three children, 2 of which are teenagers and hopefully have a long full life

ahead of them. My husband wants to continue to live life to the fullest,

and he enjoys his beer, too. He told me last night that when it is his time

to go, he will go. He does not want any drastic measures performed to keep

him alive - therefore, no transplant. I told him that he should at least be

evaluated and plan on being put on the list so that he is eligible - he can

always say 'no' when a liver would become available. He still told me that

he does not want to do that. He does not even want for his parents to know

more about this disease (he wants to spare them the worry and concern over

something that they cannot control), or even that he is possibly nearing the

end-stages of it - possibly within the next 1-2 years for him due to his

signs and symptoms. So we cried last night. I have cried plenty today,

too. He said that he wants to leave something behind (an inheritance) for

our children so that they can get a good start in their young adult lives,

and he knows that we would be depleted of everything we have saved for in

order to go through the transplant process, and he feels that it would only

be selfish to use it all for himself. Of course, I stressed that his kids

care about having their father around to live with them more than any

inheritance, but he has very strong and valid feelings about what he wants

to do. All I can do is to pass along information as I understand it and

love him and care for him - and respect his wishes.

I know that I cannot say that I understand first-hand what you must be going

through, as you stated: " about being a young adult.... and being handed a

death sentence " . I can certainly remember, though, being only concerned

about whether the guy in Biology class that I liked would notice me or would

ask me out. I would encourage you to make every effort to keep a positive

attitide and to live a healthy lifestyle - that is what everyone should do,

regardless of their health! Well, this is coming from the daughter of a

father who has been on this bg health kick for many, many years - the

Macrobiotic diet. I do not adhere to the principals of it, but I certainly

do what I can to eat a healthy, balanced diet.

In summary, Nick, even though your way of dealing with this disease is

probably not identical to anyone else's, it is the way you want to do that,

and I respect that. I will keep you in my thoughts and prayers.

Beth wife of Steve, PSC dx 12/93

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[Guest guest]

Hi its Luanne ...I have the other 17 yr old son on here....I wrote you back

on May 4th I think and had answered your questions about eye problems....I

was hoping to hear from you..There are so few of us on here with young

sons...it would be nice to have the support of some others mothers.

I hope you will find the time to write...

Luanne Ty's mom

[Guest guest]

Nick

I am a mom on here of a 17 yr old son who has PSC,AIH,Crohns and Rhuematoid

Arthritis.....diagnosed at age 10...

I am here to do the research...learn what I can and be up on all the new

anything that I can find out....also for the support...

My son is NOT on the list and leads his life as if nothing was

different....Yes he takes lots of pills....over 100 a week...but with out

them he would not be able to do what he is doing...going on a canoe trip with

the school yesterday...playing in a school band...having friends...having a

job and doing well....he is now a manager at age 17 after one year

there....he is very proud of himself and likes himself....Yes he spends lots

of time in the hosp and makes it to school only a 3-4 days a week...but that

has not crushed his spirit....he is bright and thinks highly of his

doctors....who i\he has known since he was born...My other older son has the

same docs...for UC....Tyler is planning on going to college and become a

doc...ped.GI specialist to be exact and work with his docs....and they

encourage him 100%....He has one more year of HS and has been planning for

college for 2 years now...He is very excited....He has a great sense of humor

and uses it all the time....In fact he feels that he would not be the person

he is today if he had not gotten all of this....His plans in the future is to

be a doc to help other children go thru this...with humor...the way his doc

and he deal with all of this together....He even jokes about when he is in

college that he will be able to get into any frat. that he wants because they

all want someone to be the designated driver....He does not drink and knows

that with all his meds...that that would be the death sentence....

You are right...everyone deals with this different....Ty uses humor...and

knows that I will be there with all the info for him.....He listens to his

docs and understands everything but doesn't dwell on it.....

He also doesn't share a whole lot with his friends....but just goes on day by

day....

Please know that everyone here is different and handles everything

differently....NO ONE is wrong....what works for you is what works.....

I welcome you to the group...

Luanne Ty's mom

[Guest guest]

Nick,

I certainly understand your frustration with this disease, and with the

limited options presented to us by the medical community. I was 22, and

in college when I was diagnosed, and had probably had the disease for

several years at that point. I too didn't want to give up my quality of

life for the disease... I didn't stop dating the girl who is now my

wife, and I stayed involved in my school activities, as well as my

studies.

On the other hand I didn't (and still don't) see taking a few pills, and

not drinking alcohol as a real impact on my quality of life. (I guess

this could depend on how you define quality of life!) In any case I did

try to live as normal a life as possible, while still taking reasonable

care of my health. I'm now 30, and have a wife and an 18 month old

daughter, and they are my main reason for wanting to beat this disease.

I am getting to the place where I might need a transplant within the

next few years, and if a transplant what it takes to stay alive and see

my baughter grow up, and to be here for her when she needs me then I

will try my best to get one.

I guess my point is that if you want to live a normal life, your point

of view may change over time. That girl may have been looking at you,

not the guy behind you, and maybe you'll end up marrying her some day.

It would be a shame if choices you make about your health now end up

giving you less time when you really want it.

I hope that didn't come across too much like a sermon. I just thought

that maybe the perspective of someone who's been where you are, but who

has also seen a different side of things might be helpful. If it is,

good. If not, ignore it, and no offence intended!

Good luck, and God bless!

athan