RE: Average time to need liver transplant

[Guest guest]

I think the range is 3 to 18 years with the average is sround 10 years.

But then I have also heard from someon on the forum here that some

people diagnosised with PSC have had it for 20 to 30 years.

Beth B-Thornton, CO

UC-1979, S-Pouch-1982

PSC-June 2008

>

> Does anyone know what the average number of years from diagnosis with

> PSC to the time you need a liver transplant?

>

[Guest guest]

I think the range is 3 to 18 years with the average is sround 10 years.

But then I have also heard from someon on the forum here that some

people diagnosised with PSC have had it for 20 to 30 years.

Beth B-Thornton, CO

UC-1979, S-Pouch-1982

PSC-June 2008

>

> Does anyone know what the average number of years from diagnosis with

> PSC to the time you need a liver transplant?

>

[Guest guest]

Welcome to the group. We are all different and so PSC progresses differently in each of us. Most of the information on the web is dated, but we were given a link to a recent article on PSC;

http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract & jnlKy=2 & atlKy=8237 & isuKy=802 & spage=0 & isArt=t & fromfold=Current

Under " PROGNOSIS " it states " median transplant-free survival of 18 years " . That figure is much closer to my personal experience (I was diagnosed 19 years ago) than other documents I've seen that stated live expectancy of only 11-12 years.

Ian (52) PSC 89

Does anyone know what the average number of years from diagnosis with PSC to the time you need a liver transplant? -- Ian Cribb P.Eng.

[Guest guest]

The time has been 10-12 years. The latest research paper now says 18 years. Since there is no treatment that would explain this change, I suspect the discrepency is that doctors are now diagnosing the disease earlier, and possibly suspecting it earlier. It took 5-6 years to diagnose my PSC from the time it was first suspected. The range as to how long people can have PSC is months to three or four decades.

Marie

To: From: fishcox@...Date: Mon, 25 Aug 2008 22:42:00 +0000Subject: Average time to need liver transplant

Does anyone know what the average number of years from diagnosis with PSC to the time you need a liver transplant? Get thousands of games on your PC, your mobile phone, and the web with Windows®. Game with Windows

[Guest guest]

I was diagnosed in 2001 and had a MELD score of 14 ... progressed

through ascites (three hernia surgeries) bouts of ammonia-induced

memory loss, nose bleeds, extreme fatigue, etc. Received two liver

transplants in August/September of 2007 ... when my MELD score was

averaging 25, with one spike to 28. Now one year later ... things are

fine ... working everyday ... putting some weight back on, etc.

[Guest guest]

I was diagnosed in 2001 and had a MELD score of 14 ... progressed

through ascites (three hernia surgeries) bouts of ammonia-induced

memory loss, nose bleeds, extreme fatigue, etc. Received two liver

transplants in August/September of 2007 ... when my MELD score was

averaging 25, with one spike to 28. Now one year later ... things are

fine ... working everyday ... putting some weight back on, etc.