Re: It has been a Rollercoaster ride

[Guest guest]

Welcome to the group. We are sorry that your daughter has been

diagnosed with PSC, but I hope you will find the support and

information here that you and your family need to help your daughter

live her life to the fullest. May your daughter continue to be

asymptomatic for many years.

No matter what her current condition is, it is difficult to forecast

what will happen. As the paper Primary Sclerosing Cholangitis in

Children: A Histologic Follow-up Study (in the files section of the

web site - http://health.groups.yahoo.com/group/psc-

support/files/) concludes: " this review suggests that PSC in

children frequently has an insidious onset, with most children

having advanced disease at presentation. The histologic findings at

diagnosis are generally not predictive of disease progression. "

Tim R, ltx 1998, recurrent PSC 2002, relisted 2005, MELD=19

>... A biopsy was performed and she was diagnosed with Autoimmune

> Hep. with cirrhosis.

> ... Another biopsy with some of the best doctors in the

> country. Her new diagnosis....not autoimmune hepatiis but

> unequivocally PSC. She is asystematic right now and I met with the

> doctors yesterday, we will just have to sit, wait and watch.

> ... Now that we do know I have been going through

> every emotion in the book but I also know we will have to be

strong

> and deal with what comes our way. Thanks for all the posts that I

> have read it really makes me feel we are not alone. Thank you.

>

[Guest guest]

Welcome to the group. We are sorry that your daughter has been

diagnosed with PSC, but I hope you will find the support and

information here that you and your family need to help your daughter

live her life to the fullest. May your daughter continue to be

asymptomatic for many years.

No matter what her current condition is, it is difficult to forecast

what will happen. As the paper Primary Sclerosing Cholangitis in

Children: A Histologic Follow-up Study (in the files section of the

web site - http://health.groups.yahoo.com/group/psc-

support/files/) concludes: " this review suggests that PSC in

children frequently has an insidious onset, with most children

having advanced disease at presentation. The histologic findings at

diagnosis are generally not predictive of disease progression. "

Tim R, ltx 1998, recurrent PSC 2002, relisted 2005, MELD=19

>... A biopsy was performed and she was diagnosed with Autoimmune

> Hep. with cirrhosis.

> ... Another biopsy with some of the best doctors in the

> country. Her new diagnosis....not autoimmune hepatiis but

> unequivocally PSC. She is asystematic right now and I met with the

> doctors yesterday, we will just have to sit, wait and watch.

> ... Now that we do know I have been going through

> every emotion in the book but I also know we will have to be

strong

> and deal with what comes our way. Thanks for all the posts that I

> have read it really makes me feel we are not alone. Thank you.

>

[Guest guest]

Welcome to the group. We are sorry that your daughter has been

diagnosed with PSC, but I hope you will find the support and

information here that you and your family need to help your daughter

live her life to the fullest. May your daughter continue to be

asymptomatic for many years.

No matter what her current condition is, it is difficult to forecast

what will happen. As the paper Primary Sclerosing Cholangitis in

Children: A Histologic Follow-up Study (in the files section of the

web site - http://health.groups.yahoo.com/group/psc-

support/files/) concludes: " this review suggests that PSC in

children frequently has an insidious onset, with most children

having advanced disease at presentation. The histologic findings at

diagnosis are generally not predictive of disease progression. "

Tim R, ltx 1998, recurrent PSC 2002, relisted 2005, MELD=19

>... A biopsy was performed and she was diagnosed with Autoimmune

> Hep. with cirrhosis.

> ... Another biopsy with some of the best doctors in the

> country. Her new diagnosis....not autoimmune hepatiis but

> unequivocally PSC. She is asystematic right now and I met with the

> doctors yesterday, we will just have to sit, wait and watch.

> ... Now that we do know I have been going through

> every emotion in the book but I also know we will have to be

strong

> and deal with what comes our way. Thanks for all the posts that I

> have read it really makes me feel we are not alone. Thank you.

>

[Guest guest]

Dear " tmcos4 " ;

I am so sorry to hear about your daughter's PSC diagnosis. It is

indeed a great shock, and the overwhelming sadness of the parents is

very real and difficult to describe. I have to confess that the

sadness doesn't go away with time, but by learning about the disease

and its complications one at least becomes better prepared to deal

with potential problems as they might arise. My son was diagnosed

with PSC at age 18. He's been mostly asymptomatic during the last 3

years, apart from fatigue and itching. The latter was fairly

promptly controlled with a prescription of rifampin. He's been on

ursodiol for 3 years, and asacol for the same period [he was

diagnosed with ulcerative colitis after PSC was discovered]. He's

done well at college, and is currently thinking about Med School and

is now doing a summer internship at the National Institutes of

Health in Bethesda, MD. I felt so sick to my stomach with worry when

I left him in Bethesda this last Monday .... what if he gets sick?

It's the " what ifs " that seem to be the hardest to deal with as a

parent. I try to counter my worrying " what ifs " with positive " what

ifs " ... such as, what if he has a great time and doesn't get sick?

We shouldn't deny him this important life experience because

something bad " might " happen ... it might not. And if it does

happen, we'll just try to deal with it as it comes along. My wife

and I have found some peace by participating in this support group,

and contributing our time and energy to the PSC Partners Seeking a

Cure foundation with the goal of raising funds to support PSC

research. I'll be attending the Foundation science advisory

board meeting at the end of June and will find out at that time what

research the Foundation will be funding. This will help us

better decide what research PSC Partners should be supporting to

avoid duplication. There are clearly many things that we can each do

to raise awareness, educate and provide support to others. These

positive steps, although small, do seem to help counter some of the

deep sadness that we feel. Please let us know if we can answer any

of your questions.

Best regards,

Dave

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

[Guest guest]

Dear " tmcos4 " ;

I am so sorry to hear about your daughter's PSC diagnosis. It is

indeed a great shock, and the overwhelming sadness of the parents is

very real and difficult to describe. I have to confess that the

sadness doesn't go away with time, but by learning about the disease

and its complications one at least becomes better prepared to deal

with potential problems as they might arise. My son was diagnosed

with PSC at age 18. He's been mostly asymptomatic during the last 3

years, apart from fatigue and itching. The latter was fairly

promptly controlled with a prescription of rifampin. He's been on

ursodiol for 3 years, and asacol for the same period [he was

diagnosed with ulcerative colitis after PSC was discovered]. He's

done well at college, and is currently thinking about Med School and

is now doing a summer internship at the National Institutes of

Health in Bethesda, MD. I felt so sick to my stomach with worry when

I left him in Bethesda this last Monday .... what if he gets sick?

It's the " what ifs " that seem to be the hardest to deal with as a

parent. I try to counter my worrying " what ifs " with positive " what

ifs " ... such as, what if he has a great time and doesn't get sick?

We shouldn't deny him this important life experience because

something bad " might " happen ... it might not. And if it does

happen, we'll just try to deal with it as it comes along. My wife

and I have found some peace by participating in this support group,

and contributing our time and energy to the PSC Partners Seeking a

Cure foundation with the goal of raising funds to support PSC

research. I'll be attending the Foundation science advisory

board meeting at the end of June and will find out at that time what

research the Foundation will be funding. This will help us

better decide what research PSC Partners should be supporting to

avoid duplication. There are clearly many things that we can each do

to raise awareness, educate and provide support to others. These

positive steps, although small, do seem to help counter some of the

deep sadness that we feel. Please let us know if we can answer any

of your questions.

Best regards,

Dave

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

[Guest guest]

Dear , Thank you for your honesty and words of support. It is somewhat comforting knowing I am not alone with the feelings I am having about my daughter at this time. I spent the morning on the website PSC Partners Seeking a Cure. It is an wonderful website and I am in awe of you with all you do to promote further research in the area of PSC. I am convinced that research and advancements are our greatest hope at this time. The 2006 Conference seemed amazing with so much information. This morning I sent for my CD copy and also my Kroger card to help out as much as possible. Sometimes diving into a scary situation helps to calm, understand and prepare. That is where I am. Again, thank you for all you are doing it is huge and truly commendable. wrote: Dear "tmcos4";I am so sorry to hear about your daughter's PSC diagnosis. It is indeed a great shock, and the overwhelming sadness of the parents is very real and difficult to describe. I have to confess that the sadness doesn't go away with time, but by learning about the disease and its complications one at least becomes better prepared to deal with potential problems as they might arise. My son was diagnosed with PSC at age 18. He's been mostly asymptomatic during the last 3 years, apart from fatigue and itching. The latter was fairly promptly controlled with a prescription of

rifampin. He's been on ursodiol for 3 years, and asacol for the same period [he was diagnosed with ulcerative colitis after PSC was discovered]. He's done well at college, and is currently thinking about Med School and is now doing a summer internship at the National Institutes of Health in Bethesda, MD. I felt so sick to my stomach with worry when I left him in Bethesda this last Monday .... what if he gets sick? It's the "what ifs" that seem to be the hardest to deal with as a parent. I try to counter my worrying "what ifs" with positive "what ifs" ... such as, what if he has a great time and doesn't get sick? We shouldn't deny him this important life experience because something bad "might" happen ... it might not. And if it does happen, we'll just try to deal with it as it comes along. My wife and I have found some peace by participating in this support group, and contributing our time and energy to the PSC

Partners Seeking a Cure foundation with the goal of raising funds to support PSC research. I'll be attending the Foundation science advisory board meeting at the end of June and will find out at that time what research the Foundation will be funding. This will help us better decide what research PSC Partners should be supporting to avoid duplication. There are clearly many things that we can each do to raise awareness, educate and provide support to others. These positive steps, although small, do seem to help counter some of the deep sadness that we feel. Please let us know if we can answer any of your questions.Best regards,Dave (father of (21); PSC 07/03; UC 08/03) __________________________________________________

[Guest guest]

Dear , Thank you for your honesty and words of support. It is somewhat comforting knowing I am not alone with the feelings I am having about my daughter at this time. I spent the morning on the website PSC Partners Seeking a Cure. It is an wonderful website and I am in awe of you with all you do to promote further research in the area of PSC. I am convinced that research and advancements are our greatest hope at this time. The 2006 Conference seemed amazing with so much information. This morning I sent for my CD copy and also my Kroger card to help out as much as possible. Sometimes diving into a scary situation helps to calm, understand and prepare. That is where I am. Again, thank you for all you are doing it is huge and truly commendable. wrote: Dear "tmcos4";I am so sorry to hear about your daughter's PSC diagnosis. It is indeed a great shock, and the overwhelming sadness of the parents is very real and difficult to describe. I have to confess that the sadness doesn't go away with time, but by learning about the disease and its complications one at least becomes better prepared to deal with potential problems as they might arise. My son was diagnosed with PSC at age 18. He's been mostly asymptomatic during the last 3 years, apart from fatigue and itching. The latter was fairly promptly controlled with a prescription of

rifampin. He's been on ursodiol for 3 years, and asacol for the same period [he was diagnosed with ulcerative colitis after PSC was discovered]. He's done well at college, and is currently thinking about Med School and is now doing a summer internship at the National Institutes of Health in Bethesda, MD. I felt so sick to my stomach with worry when I left him in Bethesda this last Monday .... what if he gets sick? It's the "what ifs" that seem to be the hardest to deal with as a parent. I try to counter my worrying "what ifs" with positive "what ifs" ... such as, what if he has a great time and doesn't get sick? We shouldn't deny him this important life experience because something bad "might" happen ... it might not. And if it does happen, we'll just try to deal with it as it comes along. My wife and I have found some peace by participating in this support group, and contributing our time and energy to the PSC

Partners Seeking a Cure foundation with the goal of raising funds to support PSC research. I'll be attending the Foundation science advisory board meeting at the end of June and will find out at that time what research the Foundation will be funding. This will help us better decide what research PSC Partners should be supporting to avoid duplication. There are clearly many things that we can each do to raise awareness, educate and provide support to others. These positive steps, although small, do seem to help counter some of the deep sadness that we feel. Please let us know if we can answer any of your questions.Best regards,Dave (father of (21); PSC 07/03; UC 08/03) __________________________________________________

[Guest guest]

Dear , Thank you for your honesty and words of support. It is somewhat comforting knowing I am not alone with the feelings I am having about my daughter at this time. I spent the morning on the website PSC Partners Seeking a Cure. It is an wonderful website and I am in awe of you with all you do to promote further research in the area of PSC. I am convinced that research and advancements are our greatest hope at this time. The 2006 Conference seemed amazing with so much information. This morning I sent for my CD copy and also my Kroger card to help out as much as possible. Sometimes diving into a scary situation helps to calm, understand and prepare. That is where I am. Again, thank you for all you are doing it is huge and truly commendable. wrote: Dear "tmcos4";I am so sorry to hear about your daughter's PSC diagnosis. It is indeed a great shock, and the overwhelming sadness of the parents is very real and difficult to describe. I have to confess that the sadness doesn't go away with time, but by learning about the disease and its complications one at least becomes better prepared to deal with potential problems as they might arise. My son was diagnosed with PSC at age 18. He's been mostly asymptomatic during the last 3 years, apart from fatigue and itching. The latter was fairly promptly controlled with a prescription of

rifampin. He's been on ursodiol for 3 years, and asacol for the same period [he was diagnosed with ulcerative colitis after PSC was discovered]. He's done well at college, and is currently thinking about Med School and is now doing a summer internship at the National Institutes of Health in Bethesda, MD. I felt so sick to my stomach with worry when I left him in Bethesda this last Monday .... what if he gets sick? It's the "what ifs" that seem to be the hardest to deal with as a parent. I try to counter my worrying "what ifs" with positive "what ifs" ... such as, what if he has a great time and doesn't get sick? We shouldn't deny him this important life experience because something bad "might" happen ... it might not. And if it does happen, we'll just try to deal with it as it comes along. My wife and I have found some peace by participating in this support group, and contributing our time and energy to the PSC

Partners Seeking a Cure foundation with the goal of raising funds to support PSC research. I'll be attending the Foundation science advisory board meeting at the end of June and will find out at that time what research the Foundation will be funding. This will help us better decide what research PSC Partners should be supporting to avoid duplication. There are clearly many things that we can each do to raise awareness, educate and provide support to others. These positive steps, although small, do seem to help counter some of the deep sadness that we feel. Please let us know if we can answer any of your questions.Best regards,Dave (father of (21); PSC 07/03; UC 08/03) __________________________________________________

[Guest guest]

> It's the " what ifs " that seem to be the hardest to deal with as a

> parent. I try to counter my worrying " what ifs " with positive " what

> ifs " ... such as, what if he has a great time and doesn't get sick?

> We shouldn't deny him this important life experience because

> something bad " might " happen ... it might not.

I hope that appreciates your positive attitude. I can't

emphasize enough how much I would have appreciated your perspective

from my own parents when I was diagnosed with UC at 16.

The summer program at NIH is really good, and the students are very

bright, so good for him! And if he does get sick, he's got 3

hospitals within 500 yards of the lab. (Suburban, NIH Clinical Center,

Bethesda Naval). I did some of my graduate work in Building 36, across

the street from Suburban, on Old town Rd.

Martha (MA)

43, UC 1979, PSC 1992

[Guest guest]

> It's the " what ifs " that seem to be the hardest to deal with as a

> parent. I try to counter my worrying " what ifs " with positive " what

> ifs " ... such as, what if he has a great time and doesn't get sick?

> We shouldn't deny him this important life experience because

> something bad " might " happen ... it might not.

I hope that appreciates your positive attitude. I can't

emphasize enough how much I would have appreciated your perspective

from my own parents when I was diagnosed with UC at 16.

The summer program at NIH is really good, and the students are very

bright, so good for him! And if he does get sick, he's got 3

hospitals within 500 yards of the lab. (Suburban, NIH Clinical Center,

Bethesda Naval). I did some of my graduate work in Building 36, across

the street from Suburban, on Old town Rd.

Martha (MA)

43, UC 1979, PSC 1992

[Guest guest]

> It's the " what ifs " that seem to be the hardest to deal with as a

> parent. I try to counter my worrying " what ifs " with positive " what

> ifs " ... such as, what if he has a great time and doesn't get sick?

> We shouldn't deny him this important life experience because

> something bad " might " happen ... it might not.

I hope that appreciates your positive attitude. I can't

emphasize enough how much I would have appreciated your perspective

from my own parents when I was diagnosed with UC at 16.

The summer program at NIH is really good, and the students are very

bright, so good for him! And if he does get sick, he's got 3

hospitals within 500 yards of the lab. (Suburban, NIH Clinical Center,

Bethesda Naval). I did some of my graduate work in Building 36, across

the street from Suburban, on Old town Rd.

Martha (MA)

43, UC 1979, PSC 1992

[Guest guest]

Dear Martha;

That's a coincidence. is living in a house just off Greentree

which intersects with Old town Rd. His bus goes right by

Bethesda Naval and Suburban Hospital to Bethesda Metro Station ... he

then takes the Metro to the NIH satellite campus on Fishers Lane near

the Twinbrook Metro Station in Rockville. I'm hoping he has a

stimulating experience ... and I promise to think positive! We did get

chance to tour some of the monuments/memorials in Washington D.C. last

Sunday. That was certainly a lot of fun.

Best wishes,

Dave R.

[Guest guest]

Dear ;

Good for you! Thanks so much for helping out! Let us know if we can

help answer any of your questions.

I'm still trying to learn how to take it one day at a time, and to

try to enjoy the " now " rather than worry about what " might be " in

the future. Who knows, but in the near future there might be

wonderful research breakthroughs that we cannot yet imagine?

Best wishes,

Dave

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

> This morning I sent for my CD copy and also my Kroger card to help

out as much as possible. Sometimes diving into a scary situation

helps to calm, understand and prepare. That is where I am.