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hiker1
@hiker1

Posts: 2
Joined: Nov 02, 2011

PSC of the liver

Posted by @hiker1, Nov 2, 2011

would like to talk with other people with psc

Liked by Cmogey

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Rosemary, Volunteer Mentor
@rosemarya

Posts: 1086
Joined: Aug 30, 2011
Posted by @rosemarya, Nov 2, 2011

I was diagnosed with PSC in ’04. Transplanted in ’09. Enjoying a healthy and active life.
Would be happy to talk with you.
Rosemary


pak001
@pak001

Posts: 4
Joined: Nov 05, 2011
Posted by @pak001, Nov 5, 2011

My mother has PSC and now possible bile duct cancer. Did you have transplant at Mayo? we live in Cleveland Ohio and I am thinking about making an appt at Mayo to eval my mom. I was reading about the program at Mayo and they seem to be more aggressive in treatment for liver cancer, etc… here than Cleveland Clinic. Please respond back, thanks


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1086
Joined: Aug 30, 2011
Posted by @rosemarya, Nov 5, 2011

My local doctors suspected that I might have cancer in the bile ducts. They sent me to the Mayo Clinic because that is where the experts in cholangiocarcinoma are located.
I, by the way, did not have cholangiocarcinoma. Yes, I recieved my transplant at the Rochester Mayo Clinic.
Completely satisfied and healthy!


pak001
@pak001

Posts: 4
Joined: Nov 05, 2011
Posted by @pak001, Nov 6, 2011

Did your local doctors think bile duct cancer from a test or did they just assume. My mother had CT scan only, the surgeon looked at it and stated he was 90% sure it was bile duct cancer. ALL labs are normal, except for CEA level that was 8.3. But AFP, CA 19-9 and CA 125 and liver profile are all normal. I am seriously thinking about second opinon at Mayo. She is scheduled for PET SCAN, biopsy and colonoscopy this month. We are very anxious and frightened. How was your experience at Mayo?


PSCer
@pscer

Posts: 6
Joined: Dec 30, 2011
Posted by @pscer, Dec 30, 2011

Rosemary, What symtoms did you have after being diagnosed. I asked my doctor what to expect and he told me that so little is known about PSC, he couldn’t answer my questions. I have some bile duct blockage, but my liver is still showing healthy tissue. I questioned if I could have stints put in my bile ducts while my organs are still healthy and my doctor replied that they won’t do that until I am near death. It just seems like it would be pro-active to keep the body from getting to that stage. I am here because I don’t like taking “NO” for an answer. Thanks for any response.


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1086
Joined: Aug 30, 2011
Posted by @rosemarya, Dec 30, 2011

My early symptoms were occasional fatigue and occasional mild nausea. When my liver began to decline, then I developed the more bothersome symptoms likejaundice, itching, nausea, and extreme fatigue


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1086
Joined: Aug 30, 2011
Posted by @rosemarya, Dec 30, 2011

Go to the mayoclinic web site and look up PSC under diseases. It is the best source information that I have found. I wish I had known about it early in my disease. You will find a complete list of possible symptoms.
I was told that everyone who has PSC that leads to cirrhosis will not experience the same symptoms or time table. .
They will not do stents until absolutely necessary because it might not be the solution for you; and there is risk of causing damage/infection with invasive procedures.


PSCer
@pscer

Posts: 6
Joined: Dec 30, 2011
Posted by @pscer, Dec 30, 2011

Thank you so much for the reply!!! I have all the above symptoms except for jaundice. I will check out the mayo site that you recommended.


lnerrr
@lnerrr

Posts: 11
Joined: Feb 28, 2012
Posted by @lnerrr, Jul 14, 2012

Rosemary, thank you for your responses. I have several questions: How soon after diagnosis did your serious continuous jaundice, and extreme fatigue set in? How did your actual liver feel? How soon after these worsening feelings was your transplant done? How did your MELD scores progress? How did they talk to you about availability of a liver Were you on any other hospital transplant list?After my May visit this year, my energy and strength returned . My liver tests are still in the 300 ranges but bilirubin and CA19-9 tumor test are way down.
I am in year 15 after diagnosis. I have dormant(for decades) ulcerative colitis too. So far no cancer anywhere. Mayo docs say I am at intermediate stage in transplant process. I may go on transplant list in Fall. How fast can the liver deteriorate? Do I have 3-5 years if all conditions stay stabilized before transplant?
I look forward to communicating. Lots of questions fro me! Rod


TimZ
@timz

Posts: 2
Joined: Aug 17, 2012
Posted by @timz, Aug 17, 2012

I had a liver transplant in 2003 from having PSC at Indiana University Hospital. Any questions on pre or post are welcome. Was on transplant list for 6 years.


TimZ
@timz

Posts: 2
Joined: Aug 17, 2012
Posted by @timz, Aug 17, 2012

There is no way to know how long liver may last, when it does go south, it happens very fast.


lnerrr
@lnerrr

Posts: 11
Joined: Feb 28, 2012
Posted by @lnerrr, Aug 17, 2012

Tim , thx for responding. How long from diagnosis did you 6 years started on list? I am at 15 and not on list yet. But this year after many regular years, has been tough with more and staying fatigue and feelings of nausea. I get more sudden fever and chills. I am finding it challenging to focus at work? How bad was your fatigue? How did your numbers generally change prior to getting on list? Did symptoms come and go ? How did they progressively worsen?When did they figure u were ready for list and how did u progress on list? I worry how much worse my fatigue and nausea will get. I am 61 and wanting to work to 65.


hiker1
@hiker1

Posts: 2
Joined: Nov 02, 2011
Posted by @hiker1, Nov 2, 2011

thank you for responding… i have had PCS for about 6 years and doing very well. a couple of weeks ago my liver discided to go down hill. I have had a MRI done to see if there is a blockage in my ducts of the liver. blood test show very high ALT and AST all of a sudden. Doc put me on a very strong antibodic and feeling much much better. My question to you is did this happen to you? I have done so well these past years and I’m puzzled as to why it down hill so quickley…


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1086
Joined: Aug 30, 2011
Posted by @rosemarya, Nov 2, 2011

Yes, That is what happened to me. I was doing fine; then my numbers started to climb. At the same time I began to exhibit jaundice and itching. I do not recall if there antibiotics at that particular time. My GI referred me to our transplant clinic for a consultation and they took me on as a patient; they said I would need a liver in the ‘near ‘ future and that was not what I had expected to hear! I was also told that everyone can have different symptoms. And sometimes if it is blockage and not progressed to cirrhosis they can use stents to help drainage. My wonderful medical team kept me under close watch. My condition did continue to get worse., though.

There is nothing that you did to cause this to happen (I assume you have been under doctor supervision and taking care of yourself) That is the nature of PSC. So don’t burden yourself with guilt. Follow your doctors advice, follow lab schedule, eat healthy, exercise. That way you will be ready when/if you will need to have a transplant.
It was frustrating to have a disease that few have heard of. If you haven’t already done so, spend some time exploring the Mayo Clinic web site (diseases and treatment) for information on PSC. By the way, Mayo is the world leader in this disease.
Hope this helps.
If you want to communicate in a more private setting, I think there is a way on the ‘friends’ inbox. (I’m new at this technology)
Rosemary


Peace Keeper
@peacekeeper

Posts: 39
Joined: Nov 14, 2011
Posted by @peacekeeper, Nov 14, 2011

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