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TransplantBuddies.org Forums » Liver - Multivisceral » Anyone transplanted because of Primary Sclerosing Cholangitis? « Previous Next »
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Amanda
Member
Username: Agoodwin

Post Number: 21
Registered: 07-2010
Posted on Tuesday, March 20, 2012 - 08:59 am:   Edit Post Delete Post Print Post

Hi everyone,
I'm wondering if any of you have been transplanted due to PSC? I was transplanted at the age of 23 after 17 years of having PSC.
Now my sister is getting married, and I'm thinking about children as well, but I cannot live with knowing I passed PSC onto any of my or my sister's children. Is there a gene for it? Does anyone know? I'm seeing a genetic specialist at the Cleveland Clinic in April but am kind of curious what any of you may know about this. Thanks!
*Amanda*
My Journey: Follow My Transplant Journey
My Blog: This Crazy Miracle Called Life
Akron-Canton Trio
Forest
Member
Username: Forest

Post Number: 14
Registered: 10-2011
Posted on Tuesday, March 20, 2012 - 09:23 am:   Edit Post Delete Post Print Post

Amanda, I was transplanted August 21, 2011, in St. Louis. I was diagnosed with U/C, when I was around 30 yrs. old. I am now 49. At that time, my liver enzymes show a possible problem, which ended with a diagnosis of PSC, in 2000. My wife (Leah) and I decided not to have children early in our marriage, in 1991. This decision was not totally based on having the U/C and possible PSC, but it was something we both thought about. I know there is no definite cause for either of these diseases, but as you know, genetics does play a part. Leah and I have been following your journey for a while, and wish you all the best. Hugs!
Forest

U/C, 1993, PSC, 2000
Liver/Kidney transplant 8/21/11
St. Louis University Hospital
Joe Berry
Forum Leader
Username: Joe910

Post Number: 318
Registered: 08-2008
Posted on Tuesday, March 20, 2012 - 08:43 pm:   Edit Post Delete Post Print Post

Hi Amanda,

I had my first PSC symptoms in 1987 when I began itching, became jaundiced, had elevated liver enzymes and was very tired. I was not diagnosed until 1990 when I had the same set of symptoms. I was transplanted 10-17-2007.

I am now in the best health I have ever been. I have been told by my physicians that PSC is not inherited, I have read the same from other sources, I also had Hemochromatosis. I had both of my children go in for testing. Both passed - liver enzymes and Iron were normal. Both are over 30 now.

You are going to a great place for answers with a lot more credibility than mine. Hope you find the answer you are looking for.
Joe Berry, Peoria, IL USA
Forum Leader
Diagnosed with PSC and UC in 1990
Liver Transplant 10-17-2007
Northwestern Memorial, Chicago, IL
Joe Berry's Helpful Healthcare Hints
blog on TransplantBuddies

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