Re: 20 yr old son just diagnosed with PSC

[Guest guest]

I haven't been posting lately but I just had to respond to this post. You sound just like I did last year when my then 17 year old son was diagnosed. We also found out that he had psc (he doesn't have UC) by chance. This is truly a mixed blessing. There are times when I wish I didn't know, but then I realize that he wouldn't be taking URSO and that he'd probably be doing damage to his liver by partying at college. What you are going through is a natural grief process. I'm not going to tell you that you will ever be totally at peace with this situation but that you will come to learn to live with it much better. There are no certainties with this disease and there are many people (who probably are not needing the comfort of this group) who continue to have no symptoms for years. My greatest comfort when was diagnosed was hearing from a fellow who'd had the disease for over 30 years and was still ok. I absolutely freaked out when was diagnosed but I have come to realize that he has to go on with his life and he actually deals with psc much better than I. I have some pretty awful moments when my fears bubble up to the surface but overall I'm so much better able to handle the situation. I keep on telling myself that there are so many people out there with devastating undiagnosed illnesses and that at least knowing is better. At our children's ages they're also more likely to die in an accident and I don't continuously fret over this. is a college freshman and he is enjoying his life to the fullest; he gets angry with me when I focus on the disease and not on his wonderful life. Feel free to email me privately if you need someone to talk to who's basically in the same situation

Joan --mom of , 19 and thriving --doing a double internship in public broadcasting this summer,and working as waitstaff

20 yr old son just diagnosed with PSC

He is a 100 % fit University student, showing no symptoms whatsoever, only found abnormal liver function in routine tests.Are there any other mothers out there who can offer me some hope, any really positive stories?I am still in shock after hearing this devastating news.

[Guest guest]

I haven't been posting lately but I just had to respond to this post. You sound just like I did last year when my then 17 year old son was diagnosed. We also found out that he had psc (he doesn't have UC) by chance. This is truly a mixed blessing. There are times when I wish I didn't know, but then I realize that he wouldn't be taking URSO and that he'd probably be doing damage to his liver by partying at college. What you are going through is a natural grief process. I'm not going to tell you that you will ever be totally at peace with this situation but that you will come to learn to live with it much better. There are no certainties with this disease and there are many people (who probably are not needing the comfort of this group) who continue to have no symptoms for years. My greatest comfort when was diagnosed was hearing from a fellow who'd had the disease for over 30 years and was still ok. I absolutely freaked out when was diagnosed but I have come to realize that he has to go on with his life and he actually deals with psc much better than I. I have some pretty awful moments when my fears bubble up to the surface but overall I'm so much better able to handle the situation. I keep on telling myself that there are so many people out there with devastating undiagnosed illnesses and that at least knowing is better. At our children's ages they're also more likely to die in an accident and I don't continuously fret over this. is a college freshman and he is enjoying his life to the fullest; he gets angry with me when I focus on the disease and not on his wonderful life. Feel free to email me privately if you need someone to talk to who's basically in the same situation

Joan --mom of , 19 and thriving --doing a double internship in public broadcasting this summer,and working as waitstaff

20 yr old son just diagnosed with PSC

He is a 100 % fit University student, showing no symptoms whatsoever, only found abnormal liver function in routine tests.Are there any other mothers out there who can offer me some hope, any really positive stories?I am still in shock after hearing this devastating news.

[Guest guest]

Hi again,

I noticed that someone suggested that you get life insurance for your son. Unfortunately, once there's a diagnosis, I've found this to be impossible. Term is out and whole life is extremely high and probably not worth the cost. The agent I went through had a husband with serious liver disease so I felt that she knew what she was talking about. My feeling, is that I can only worry about what I can change and so I've chosen to place this one on the back burner.

Joan

20 yr old son just diagnosed with PSC

He is a 100 % fit University student, showing no symptoms whatsoever, only found abnormal liver function in routine tests.Are there any other mothers out there who can offer me some hope, any really positive stories?I am still in shock after hearing this devastating news.

[Guest guest]

This is my first post,

Abnormal liver function was the first tip off to me about PSC. That

was in 2004. A year later my GI diagnosed PSC. I have had ups and

downs with liver over the years but I have had a good life other

wise. I am at the point of getting a ERCP every year to open the

ducts. I married, have 4 children, go to work every day and life is

good.

Find a good doctor and then choose to live.

You need a doctor that has Emergency Room connections. Other wise

well meaning ER doctors treat you like you have a bad case of

indigestion all the while you are in great pain. If their is a doctor

that knows your case when you go in they can treat you much faster.

Most doctors that I have run into have no clue when I say PSC.

I wish you and your son the best. It was 12 years ago in April that

my liver function first showed problems. I have about 2 attacks per

year. Other wise I feel great. No itching or other problems.

> He is a 100 % fit University student, showing no symptoms whatsoever,

> only found abnormal liver function in routine tests.

>

> Are there any other mothers out there who can offer me some hope, any

> really positive stories?

>

> I am still in shock after hearing this devastating news.

>

>

>

>

>

>

>

>

[Guest guest]

Hello Joan and

thank you for your kind words. It is comforting to hear that there are

other people out there in a similar position to me. I send you all my

love and best wishes to you and your families.

Tom, my son, is so fit and healthy and strong, it just doesnt seem

possible that he has such a dreadful illness.

We are in England, and most of support group seem to be in USA - I just

wondered if there was more research and advances in treatment over

there. Is it as difficult over there to get a liver transplant as it is

here?

Kindest regards

Angelina

[Guest guest]

Hello Joan and

thank you for your kind words. It is comforting to hear that there are

other people out there in a similar position to me. I send you all my

love and best wishes to you and your families.

Tom, my son, is so fit and healthy and strong, it just doesnt seem

possible that he has such a dreadful illness.

We are in England, and most of support group seem to be in USA - I just

wondered if there was more research and advances in treatment over

there. Is it as difficult over there to get a liver transplant as it is

here?

Kindest regards

Angelina

[Guest guest]

Hello Joan and

thank you for your kind words. It is comforting to hear that there are

other people out there in a similar position to me. I send you all my

love and best wishes to you and your families.

Tom, my son, is so fit and healthy and strong, it just doesnt seem

possible that he has such a dreadful illness.

We are in England, and most of support group seem to be in USA - I just

wondered if there was more research and advances in treatment over

there. Is it as difficult over there to get a liver transplant as it is

here?

Kindest regards

Angelina

[Guest guest]

I know exactly how you're feeling as my 17 yr old daughter was also

diagnosed with PSC just the end of March. I too am shocked, and

although it's hard to talk about at times, sometimes it also does me

good.

The first week I thought about it 24/7 and probably cried for most

of that time. As the next couple of weeks went by it did get

easier. My daughter is doing great, taking her meds, eating well,

working part time and playing soccer. She is planning her grade 12

grad that is coming up at the end of the month so she is focused on

that. She will attend university in the fall. I have to say, I'm

impressed with her maturity and how well she's taking it.

I've come to realize that besides following Dr's orders, there is

nothing that we can do about it and I refuse to let the future ruin

the present. I've decided to stay as positive as my daughter is and

hope that she is one of the lucky ones who won't see symptoms for a

very very long time.

I'm in Canada and I have no idea how long the wait is for a liver,

but hopefully it's not something we have to worry about any time

soon.

Best wishes to your son and your family.

Kim

mother of Amber

Ottawa, Canada

[Guest guest]

Angelina, welcome. In addition to what others have said I'd recommend

checking into the newsletters on the PSCPartners website. They have a

lot of great information on PSC and medications, surveillance for

progression of the disease, etc.

I recommend living neither in denial, nor in despair. PSC can be

terrible, but it can also take a long time to manifest itself. And

that time is a great advantage, because we can hope there will be

breakthroughs in anti-inflammation meds, surgery, etc that will

postpone trouble even longer. We hope to soon fund some of this

research through PSC partners, and there are other funding

organizations already at work. Many of our members have been diagnosed

and gone on to marry, have families, get degrees, advance their

careers, and contribute great things to their friends and communities.

Many have recovered from illness and transplants, then returned to

working or other fulfilling activities.

Good luck to you and Tom, and do ask more questions. Most doctors

don't know much about PSC, so do connect with Dr Chapman's group, even

if Tom can't see Dr. Chapman regularly.

Martha (Massachusetts)

43, UC 1979, PSC, 1992 and still feeling fine.

> Tom, my son, is so fit and healthy and strong, it just doesnt seem

> possible that he has such a dreadful illness.

[Guest guest]

I also have an 18 year old who just completed his college freshman

year and was diagnosed with both PSc and UC around the time he

foinished high school so just getting to a year. This time last year,

it was extremely stressful for all of us. He was only diagnosed after

months of diarrhea which we found out later was due to the UC.Recently

we have been told he has an overlap PSC and autoimmune hepatitis. MRCP

showed he has some strictures in the bile ducts. Currently he is

doing well. He is on URSA, asacol, azathioprine and being tapered off

prednisone (takes 2.5 mg every other day. He also takes other

supplements ie calcium, folic acid, fish oil and multivites. He is

also doing great in college. He just traveled this morning to the UK

(London) where he will be for a month. I think I do enough worrying

for everyone. I just try to remind my son to eat and take his medicines.

Rita (Florida)

[Guest guest]

I also have an 18 year old who just completed his college freshman

year and was diagnosed with both PSc and UC around the time he

foinished high school so just getting to a year. This time last year,

it was extremely stressful for all of us. He was only diagnosed after

months of diarrhea which we found out later was due to the UC.Recently

we have been told he has an overlap PSC and autoimmune hepatitis. MRCP

showed he has some strictures in the bile ducts. Currently he is

doing well. He is on URSA, asacol, azathioprine and being tapered off

prednisone (takes 2.5 mg every other day. He also takes other

supplements ie calcium, folic acid, fish oil and multivites. He is

also doing great in college. He just traveled this morning to the UK

(London) where he will be for a month. I think I do enough worrying

for everyone. I just try to remind my son to eat and take his medicines.

Rita (Florida)

[Guest guest]

I also have an 18 year old who just completed his college freshman

year and was diagnosed with both PSc and UC around the time he

foinished high school so just getting to a year. This time last year,

it was extremely stressful for all of us. He was only diagnosed after

months of diarrhea which we found out later was due to the UC.Recently

we have been told he has an overlap PSC and autoimmune hepatitis. MRCP

showed he has some strictures in the bile ducts. Currently he is

doing well. He is on URSA, asacol, azathioprine and being tapered off

prednisone (takes 2.5 mg every other day. He also takes other

supplements ie calcium, folic acid, fish oil and multivites. He is

also doing great in college. He just traveled this morning to the UK

(London) where he will be for a month. I think I do enough worrying

for everyone. I just try to remind my son to eat and take his medicines.

Rita (Florida)

[Guest guest]

I appreciated your comments but wonder do you ever

feel as though this disease consumes alot of your

thought.

My circumstances mirror yours. I was diagnosed in

1994 at the time our first child was born. I have

been pretty much symptom free, until recently. The

ducts are closing and can't all be opened. I have a

wife and two girls and go to work every day. I find

myself consumed by planning for the future and coping

with quality of life issues.

Best wishes

--- E Franson wrote:

> Sorry, I got the date wrong, 1994, not 2004.

>

>

>

> > This is my first post,

> >

> > Abnormal liver function was the first tip off to

> me about PSC. That

> > was in 2004. A year later my GI diagnosed PSC. I

> have had ups and

> > downs with liver over the years but I have had a

> good life other

> > wise. I am at the point of getting a ERCP every

> year to open the

> > ducts. I married, have 4 children, go to work

> every day and life is

> > good.

> >

> > Find a good doctor and then choose to live.

> >

> > You need a doctor that has Emergency Room

> connections. Other wise

> > well meaning ER doctors treat you like you have a

> bad case of

> > indigestion all the while you are in great pain.

> If their is a doctor

> > that knows your case when you go in they can treat

> you much faster.

> > Most doctors that I have run into have no clue

> when I say PSC.

> >

> > I wish you and your son the best. It was 12 years

> ago in April that

> > my liver function first showed problems. I have

> about 2 attacks per

> > year. Other wise I feel great. No itching or other

> problems.

> >

> >

> >

>

>

>

__________________________________________________

[Guest guest]

I am not sure what life holds for me. I think that part of my lack of

worry about the PSC issue was the way my doctor treated the

diagnosis. My understanding was that it wasn't a big deal as long as

I took the Ursidol. I now know that PSC is progressive no matter how

much Ursidol I take and odds are there are some big challenges coming

soon.

I just had an ERCP April 28. One of the three major ducts is

completely blocked and the other two had major strictures and

dilations. The doctor at the University of Utah recommended that I

have an annual ERCP for maintenance.

I am seeing a Heptologist/Transplant Specialist in June to get some

information to help me plan for my future.

I feel great today, It is true that I am nervous about my future and

the future of my family. But, my wife and children need me to live

today and with their support we will make it through the next

challenges that PSC gives us.

What if? is a question that I can't help but ask. It is also a

question that I can't answer.

Live today with no regrets. Hug your wife and children.

I know the next PSC attack will come and it really does scare me. I

just can't put life on hold while I wait.

Thank you Phil for responding to my thoughts.

> I appreciated your comments but wonder do you ever

> feel as though this disease consumes alot of your

> thought.

>

> My circumstances mirror yours. I was diagnosed in

> 1994 at the time our first child was born. I have

> been pretty much symptom free, until recently. The

> ducts are closing and can't all be opened. I have a

> wife and two girls and go to work every day. I find

> myself consumed by planning for the future and coping

> with quality of life issues.

>

> Best wishes

>

[Guest guest]

I am not sure what life holds for me. I think that part of my lack of

worry about the PSC issue was the way my doctor treated the

diagnosis. My understanding was that it wasn't a big deal as long as

I took the Ursidol. I now know that PSC is progressive no matter how

much Ursidol I take and odds are there are some big challenges coming

soon.

I just had an ERCP April 28. One of the three major ducts is

completely blocked and the other two had major strictures and

dilations. The doctor at the University of Utah recommended that I

have an annual ERCP for maintenance.

I am seeing a Heptologist/Transplant Specialist in June to get some

information to help me plan for my future.

I feel great today, It is true that I am nervous about my future and

the future of my family. But, my wife and children need me to live

today and with their support we will make it through the next

challenges that PSC gives us.

What if? is a question that I can't help but ask. It is also a

question that I can't answer.

Live today with no regrets. Hug your wife and children.

I know the next PSC attack will come and it really does scare me. I

just can't put life on hold while I wait.

Thank you Phil for responding to my thoughts.

> I appreciated your comments but wonder do you ever

> feel as though this disease consumes alot of your

> thought.

>

> My circumstances mirror yours. I was diagnosed in

> 1994 at the time our first child was born. I have

> been pretty much symptom free, until recently. The

> ducts are closing and can't all be opened. I have a

> wife and two girls and go to work every day. I find

> myself consumed by planning for the future and coping

> with quality of life issues.

>

> Best wishes

>

[Guest guest]

I am not sure what life holds for me. I think that part of my lack of

worry about the PSC issue was the way my doctor treated the

diagnosis. My understanding was that it wasn't a big deal as long as

I took the Ursidol. I now know that PSC is progressive no matter how

much Ursidol I take and odds are there are some big challenges coming

soon.

I just had an ERCP April 28. One of the three major ducts is

completely blocked and the other two had major strictures and

dilations. The doctor at the University of Utah recommended that I

have an annual ERCP for maintenance.

I am seeing a Heptologist/Transplant Specialist in June to get some

information to help me plan for my future.

I feel great today, It is true that I am nervous about my future and

the future of my family. But, my wife and children need me to live

today and with their support we will make it through the next

challenges that PSC gives us.

What if? is a question that I can't help but ask. It is also a

question that I can't answer.

Live today with no regrets. Hug your wife and children.

I know the next PSC attack will come and it really does scare me. I

just can't put life on hold while I wait.

Thank you Phil for responding to my thoughts.

> I appreciated your comments but wonder do you ever

> feel as though this disease consumes alot of your

> thought.

>

> My circumstances mirror yours. I was diagnosed in

> 1994 at the time our first child was born. I have

> been pretty much symptom free, until recently. The

> ducts are closing and can't all be opened. I have a

> wife and two girls and go to work every day. I find

> myself consumed by planning for the future and coping

> with quality of life issues.

>

> Best wishes

>