mild narrowing of the bile ducts

[Guest guest]

I was diagnosed this summer with Autoimmune Overlap- Autoimmune

Hepatitis and PSC. I'm 33 and just this past month had a MRCP done to

verify my diagnosis. They found mild narrowing of the bile ducts.

What I find so frustrating about this disease is the lack of things

you can do to stop the disease from progressing. I've tried many

natural things and am taking lots of supplements provided by my DO.

But when you only see your Hepatologist doctor every three months it

feels like your forgotten. I just feel so out of control and want to

do something to help myself, but I don't have any more ideas. I eat

healthy, exercise, etc. This disease sucks!

I have twins that are 5 years old (boy and girl) and a 21 month old

daughter. What is also frustrating is I don't want them to remember me

as always being sick. But I find myself getting more and more tired.

And then I hate asking my husband to take some of my slack, because he

already has a full plate. I think it's hard to because I don't look

sick, I just feel really tired and have pain on my right side.

If any of you have any suggestions for things I can do to help myself

that have helped you let me know? Any inspiring books to read??? Also,

what about partial liver transplants? I am in stage 2 of this liver

disease. Would it be better to get a partial liver transplant now or

wait until my liver gets worse? So many questions???

Karey Wade

Liberty, Missouri

[Guest guest]

Karey,

I am sorry about your diagnose but happy

you found us. You can ask anything you want and we will try to answer as much

as we can.

I know PSC is frustrating. Most of us have

the same problems you have. Apart from eating healthy and exercising there is

indeed not much you can do. You will get a lot of advise about all kinds of

diets by different people on this group. There are people here that eat gluten

free, low fat, milk free and vegetarian. There are people that take milk

thistle, drink special tea, use acupuncture etc. I don't use any of these

myself, but if it helps for certain people that is great and fine with me. Try whatever

diet you think will help, but always talk to your hepatologist first. Most of

us here are patients, not doctors.

I know that exercise is probably not something

you look forward to when you are fatigued already, but I feel it is important

to try anyway. It made me feel more awake, even though you would expect the

contrary. Start with easy to achieve goals, and increase them when you can.

I don't think it would be a good idea just

yet to try and get transplanted when you are " only " in stage 2. Someone

after a transplant can probably explain better why.

I liked this book:

http://www.berniesiegelmd.com/love_medicine_miracles.htm

another good book is:

To the edge and back, by Klug. He

had a transplant for PSC and won an Olympic bronze medal for snowboarding 18

month after the transplant.

http://www.chrisklug.com/

The others in the US will

probably wake up soon too and give you their answers.

Regards,

Chaim Boermeester, Israel

[Guest guest]

Karey,

I am sorry about your diagnose but happy

you found us. You can ask anything you want and we will try to answer as much

as we can.

I know PSC is frustrating. Most of us have

the same problems you have. Apart from eating healthy and exercising there is

indeed not much you can do. You will get a lot of advise about all kinds of

diets by different people on this group. There are people here that eat gluten

free, low fat, milk free and vegetarian. There are people that take milk

thistle, drink special tea, use acupuncture etc. I don't use any of these

myself, but if it helps for certain people that is great and fine with me. Try whatever

diet you think will help, but always talk to your hepatologist first. Most of

us here are patients, not doctors.

I know that exercise is probably not something

you look forward to when you are fatigued already, but I feel it is important

to try anyway. It made me feel more awake, even though you would expect the

contrary. Start with easy to achieve goals, and increase them when you can.

I don't think it would be a good idea just

yet to try and get transplanted when you are " only " in stage 2. Someone

after a transplant can probably explain better why.

I liked this book:

http://www.berniesiegelmd.com/love_medicine_miracles.htm

another good book is:

To the edge and back, by Klug. He

had a transplant for PSC and won an Olympic bronze medal for snowboarding 18

month after the transplant.

http://www.chrisklug.com/

The others in the US will

probably wake up soon too and give you their answers.

Regards,

Chaim Boermeester, Israel

[Guest guest]

Hi Karey

I am so pleased you have found us. There is so much information and

support here.

Over the 3 years I have been a member of this group there is an

amazing number of members, who like you, take very good care of their

health and are amazed to find they have PSC, but sadly you have to

cope with AHI as well.

I am sorry I cannot help with information about partial liver

transplant information.

There is a search function in this forum just above the messages

which you can find previous posts about specific topics.

Best wishes

from the bottom of the world in New Zealand

>

> I was diagnosed this summer with Autoimmune Overlap- Autoimmune

> Hepatitis and PSC. I'm 33 and just this past month had a MRCP done

to

> verify my diagnosis. They found mild narrowing of the bile ducts.

I eat

> healthy, exercise, etc. This disease sucks!

>

> I have twins that are 5 years old (boy and girl) and a 21 month old

> daughter. I think it's hard to because I don't look

> sick, I just feel really tired and have pain on my right side.

> what about partial liver transplants?

> Karey Wade

[Guest guest]

Hi Karey

I am so pleased you have found us. There is so much information and

support here.

Over the 3 years I have been a member of this group there is an

amazing number of members, who like you, take very good care of their

health and are amazed to find they have PSC, but sadly you have to

cope with AHI as well.

I am sorry I cannot help with information about partial liver

transplant information.

There is a search function in this forum just above the messages

which you can find previous posts about specific topics.

Best wishes

from the bottom of the world in New Zealand

>

> I was diagnosed this summer with Autoimmune Overlap- Autoimmune

> Hepatitis and PSC. I'm 33 and just this past month had a MRCP done

to

> verify my diagnosis. They found mild narrowing of the bile ducts.

I eat

> healthy, exercise, etc. This disease sucks!

>

> I have twins that are 5 years old (boy and girl) and a 21 month old

> daughter. I think it's hard to because I don't look

> sick, I just feel really tired and have pain on my right side.

> what about partial liver transplants?

> Karey Wade

[Guest guest]

Karey,

I think some of the other members have answered some of your questions. There is lots of info on the pscsupport site. You can find about anything concerning psc.

I live over the border in KS. I was 40 and have 5 sons ages 14 down to 3 1/2 when I was diagnosed.I actually think I had psc quite a while before this but it just wasn't dx. It was very difficult some days and I had many nights that were sleepless while wondering what would become of my children if I didn't live long enough to see them as adults. I had 12 years between dx and tx. Had my transplant at KUMC in Nov. 07. The boys are ages 27 to 16 with only 3 still at home plus I am a grandma now with 2 more grandchildren on the way. I say this to hopefully encourage you that you like me have many more years on this earth to enjoy your children. It's not always easy but definitely worth it.

I do have a question. What hep do you see? Is he in Liberty? My experience with heps in the KC area is that they are in short supply. I also wondered if we might be crossing paths at KU if you are being seen there.

There are a few others in the KC area. Rich lives in Blue Springs I think and was twice tx several years ago. Not sure if he is still on this board. If my memory serves me there is at least one other but I can't recall a name. As I age, my brain cells are going fast!

Glad to see you found this list. It is an incredible group of people who are always willing to help.

Blessings,

Barby - KS

UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07 married 28 years , 5 sons, 2 daughters in law, 1 granddaughter, grandson due 10/08, grandchild due in 3/09 and 1 golden retriever