Re: PSC RECURRENCE Lee Bria

[Guest guest]

> > Dear Randy, I see that you were diagnosed just two years ago and

have

> > already had a transplant. Others it seems go for 20 years.

When I first got sick I was itching real bad, and i was scratching so

much thatI was leaving sores. Went to my Primary doctor and all he

gave me was a cream to put on. A few weeks later I was sick with the

Flu. They did blood work and found my lfts were high.

From there I just kept getting worse. Had several stints put in

becuse they kept getting blocked up. Then since Dec 2003 till the end

of Feb. 2004 I was in the Hosp here in my home town and and Mayo hosp

(2 hour drive) for a total of 60 days had a fever for over a week of

101 that would not go down. I would get out of Hosp. then 3-5 days

later I would be right back. My wife told the doctors all I do is

stay in the bedroom as I was just to tired to do any thing.

Last time I was in the hosp before my transplant wife had to call 911

cuse I could not get out of bed or even knew where I was. Next thing

I knew I woke up in a hosp. room then transfered to Mayo they sent me

home after a week saying all I could do was wait for a doner. That

was the 3rd week in Fed. then on Mar. 4th in the middle of the night

they called me for transplant.

I dont know if my blood type had any thing to do with it but i am 0-

Hope this helps you s bit snd I wish you all luck.

Randy Summitt liver transplant 3-5-04 Mayo

[Guest guest]

> If my son didn't have frequent diarrhea and weight loss [ I guess

>from the UC] then we wouldn't have known how sick he was.

That is how mine was discovered. I went to the doctor because of

diarrhea and weight loss, I was yellow which led to the test that

determined PSC. I was transplanted 8 years later. I was listed for

17 months before the transplant. It has been 7 years since my

transplant and I getting relisted because of the PSC Recurrence. I

wish your son good luck and hopefully many good years before he

needs to be transplanted.

[Guest guest]

> Thank you . In the seven years that you had your new liver,

what

> was the quality of your life? Where did you have your transplant?

The quality of my life in those seven years were pretty good. One

bout of rejection about 3 monthes after the transplant. I did and

still do suffer from migrane headaches which I didn't have before

the transplant, this was attributed to the cyclosporine. In April

of 2003 my billirubin had risen to a point where the doctors were

concerned. I could have an ERCP because all of my bile ducts and

gall bladder were removed during the transplant and my new liver was

connected directly to my duodenum. Which is normal for people with

PSC. So I had a PTC tube placed and dye injected so they could see

what was causing the blockage. It also helps with draining the

bile. I still have it today, they change it about every 4 weeks.

The only restriction I have with it is I can't go swimming or take a

bath. The end of June my billirubin had risen to 17.0 and the angio

doctors who replace the PTC tube couldn't dialate any blockages. At

this point the decision was to retransplant me. I have all of my

pretesting done and insurance approval so I should be relisted next

week. I had my transplant at the University of Michigan Transplant

Center. I will have my second transplant there also.

[Guest guest]

My husband was the same way. We've known for years that he would

someday need a liver transplant, just didn't think it would be at

the age of 38.

When the decision was made to get the transplant this year, he was

telling everyone that I was doing all the research to understand

what was happening, what happens during surgery and what our life

will be like (mainly through this group!).

UPDATE ON LONNIE: Last night he spent reading his CaringBridge

page. He said he has a better understanding of what both of us went

through. I don't think he's quite ready to write down his thoughts

(Sorry, Shaundra), but he's getting closer.

He had a really good day yesterday - even cleaned the house! He

also spend part of the day making phone calls to plan our finances

for the next few months. He's given himself until October 1 to get

healthy to go back to work. If yesterday is any indication, I think

he can achieve that.

Kathy

wife of Lonnie

UC/PSC '89

full colon removal '00

ltx 6/2/04 @ IUMed Center, Indianapolis

My son himself however wants no part of this and just wants to know

what medicines to take and when to take his allergy shots. He won't

at this time even think of reading up on his disease or joining a

support group. He gets that he has a bad disease but sees no reason

to change his life other than taking his medicine. Is this because

he is young? I don't know.