Re: After Transplant Survival Rate for PSC?

[Guest guest]

I saw the transplant team today for a routine check and the current resident mentioned she had just seen a patient who was transplanted in 1989. It was nice that she shared that, confirms my optimism.

The path of PSC is miserable, but a transplant can make life much better, if all works out. Life doesn't go back to "normal" but it can be good.

MizKit

[Guest guest]

I saw the transplant team today for a routine check and the current resident mentioned she had just seen a patient who was transplanted in 1989. It was nice that she shared that, confirms my optimism.

The path of PSC is miserable, but a transplant can make life much better, if all works out. Life doesn't go back to "normal" but it can be good.

MizKit

[Guest guest]

I saw the transplant team today for a routine check and the current resident mentioned she had just seen a patient who was transplanted in 1989. It was nice that she shared that, confirms my optimism.

The path of PSC is miserable, but a transplant can make life much better, if all works out. Life doesn't go back to "normal" but it can be good.

MizKit

[Guest guest]

Hi Tamera;

I havn't tried mining the UNOS transplant data for survival

statistic rates for PSC patients, but there are some publications

out there that have reported data of the type you are looking for,

One article is this one:

Ann Surg. 1997 May;225(5):472-81; discussion 481-3.

Orthotopic liver transplantation for primary sclerosing cholangitis.

A 12-year single center experience.

Goss JA, Shackleton CR, Farmer DG, Arnaout WS, Seu P, Markowitz JS,

P, Stribling RJ, Goldstein LI, Busuttil RW.

Department of Surgery, School of Medicine, University of California,

Los Angeles, USA.

OBJECTIVE: The purpose of this study was to analyze a single

center's 12-year experience with 127 orthotopic liver

transplantations (OLT) for primary sclerosing cholangitis (PSC).

SUMMARY BACKGROUND DATA: Primary sclerosing cholangitis is a chronic

cholestatic liver disease of unknown origin that occurs most

commonly in young men and is associated frequently (70-80%) with

inflammatory bowel disease (IBD). Patients with PSC also are at risk

for the development of cholangiocarcinoma (CCA) and those with IBD

for colon carcinoma. Although the course of PSC is variable, it

frequently is progressive, leading to cirrhosis and requirement for

OLT. METHODS: The medical records of 127 consecutive patients

undergoing OLT for PSC from July 1, 1984, to May 30, 1996, were

reviewed. Actuarial patient and graft survival was determined at

1,2, and 5 years. The incidence and outcome of patients with CCA,

recurrent sclerosing cholangitis, and post-transplant colon

carcinoma was determined. Results were analyzed by way of stepwise

regression to determine the statistical strength of independent

associations between pretransplant covariates and patient survival.

The median follow-up period was 3.01 years. Incidental

cholangiocarcinoma (ICCA) was defined as a tumor < 1 cm in size that

was discovered at the time of pathologic sectioning of the explanted

liver. RESULTS: Ninety-two patients (72%) had associated IBD.

Seventy-nine (62%) had undergone previous biliary tract surgery. One

hundred seven patients (84%) received a single graft, whereas 20

patients (16%) required 22 retransplants. Patients received either

cyclosporine- (n = 76) or tacrolimus- (n = 51) based

immunosuppression. The 1-, 2-, and 5-year actuarial patient

survivals were 90%, 86%, and 85%, respectively, whereas graft

survival was 82%, 77%, and 72%, respectively. The presence of

previous biliary surgery had no effect on patient survival. Ten

patients (8%) had ICCA and their survival was not significantly

different from patients without ICCA (100%, 83%, and 83% at 1, 2,

and 5 years, respectively). Four patients were known to have CCA at

the time of OLT, all recurred within 6 months, and had a

significantly worse outcome (p < 0.0001). Recurrent sclerosing

cholangitis developed in 11 patients (8.6%). The patient and graft

survival in this group was not different from those in whom

recurrence did not develop (patient; 100%, 90%, and 90%; graft: 80%,

70%, and 52%). Thirty patients (23%) underwent colectomy after liver

transplantation for dysplasia-carcinoma or symptomatic colitis. Of

the nine covariates entered into the multivariate regression

analysis, only common bile duct frozen section biopsy specimen

showing CCA was predictive of a survival disadvantage. CONCLUSIONS:

Liver transplantation provides excellent patient and graft survival

rates for patients affected with PSC independent of pretransplant

biliary tract surgery. Incidental cholangiocarcinoma does not affect

patient survival significantly. However, known CCA or common duct

frozen section biopsy specimen or both showing CCA are associated

with poor recipient survival, and OLT should be proscribed in these

cases. Recurrent PSC occurs in approximately 9% of cases but does

not affect patient survival. Post-transplant colectomy does not

affect patient survival adversely. PMID: 9193175.

The full text of this article is available at:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1190779

A second article is this one:

Hepatology. 1999 Nov;30(5):1121-7.

Long-term results of patients undergoing liver transplantation for

primary sclerosing cholangitis.

Graziadei IW, Wiesner RH, Marotta PJ, Porayko MK, Hay JE, Charlton

MR, Poterucha JJ, Rosen CB, Gores GJ, LaRusso NF, Krom RA.

Liver Transplant Unit, Mayo Clinic, Rochester, MN 55905, USA.

Liver transplantation is the only effective therapeutic option for

patients with end-stage liver disease due to primary sclerosing

cholangitis (PSC). In this study, we analyzed a single center's

experience with 150 consecutive PSC patients who received 174 liver

allografts. Mean follow-up was 55 months. Actuarial patient survival

at 1, 2, 5, and 10 years was 93.7%, 92.2%, 86.4%, and 69.8%,

respectively, whereas graft survival was 83.4%, 83.4%, 79.0%, and

60. 5%, respectively. The main indication for retransplantation was

hepatic artery thrombosis, and the major cause of death was severe

infection. Patients with PSC had a higher incidence of acute

cellular and chronic ductopenic rejection compared to a non-PSC

control group. Chronic ductopenic rejection adversely affected

patient and graft survival. Biliary strictures, both anastomotic and

nonanastomotic, were frequent and occurred in 16.2% and 27.2% of

patients, respectively. The incidence of recurrent PSC was 20%. A

negative impact on patient survival was not seen in patients with

either postoperative biliary strictures or recurrence of PSC. Six

patients (4%) had cholangiocarcinoma and 1 patient died related to

recurrence of malignant disease. Seventy-eight percent of PSC

patients had associated inflammatory bowel disease, most commonly

chronic ulcerative colitis, which did not adversely impact patient

outcome posttransplantation. Nine patients required proctocolectomy

after liver transplantation; 5 because of intractable symptoms

related to inflammatory bowel disease and 4 due to the development

of colorectal carcinoma/high-grade dysplasia. Our data show that

liver transplantation provides excellent long-term patient and graft

survival for patients with end-stage PSC. PMID: 10534330.

I hope this helps?

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

> Can anyone please direct me to a site with statistics for the

survival rate for people with only PSC? All I have found so far are

statistics for all liver diseases and I wonder if the survival rate

is different within PSC.

[Guest guest]

> Can anyone please direct me to a site with statistics for the survival

> rate for people with only PSC?

http://www.optn.org/data/ has national Survival by Recipient Diagnosis

Category that comes close to PSC survival data. It is mixed in with

PBC and Choles Disease, since the Cholestatic Liver diseases are:

CHOLESTATIC LIVER DISEASE/CIRRHOSIS

Primary Biliary Cirrhosis (PBC)

Sec Biliary Cirrhosis: Other Specify

Sec Biliary Cirrhosis: Caroli's Disease

Sec Biliary Cirrhosis: Choledochol Cyst

Choles Liver Disease: Other Specify

PSC: Other Specify

PSC: Ulcerative Colitis

PSC: No Bowel Disease

PSC: Crohn's Disease

The Cholestatic liver diseases have a higher survival rate than

average. At 5 years it is 80.1% vs 74.3% for patients in general with

a primary transplant. Biliary Atresia and Metabolic Disease do better

at 5 years but no one gets to chose the disease they have.

Tim R

[Guest guest]

> Can anyone please direct me to a site with statistics for the survival

> rate for people with only PSC?

http://www.optn.org/data/ has national Survival by Recipient Diagnosis

Category that comes close to PSC survival data. It is mixed in with

PBC and Choles Disease, since the Cholestatic Liver diseases are:

CHOLESTATIC LIVER DISEASE/CIRRHOSIS

Primary Biliary Cirrhosis (PBC)

Sec Biliary Cirrhosis: Other Specify

Sec Biliary Cirrhosis: Caroli's Disease

Sec Biliary Cirrhosis: Choledochol Cyst

Choles Liver Disease: Other Specify

PSC: Other Specify

PSC: Ulcerative Colitis

PSC: No Bowel Disease

PSC: Crohn's Disease

The Cholestatic liver diseases have a higher survival rate than

average. At 5 years it is 80.1% vs 74.3% for patients in general with

a primary transplant. Biliary Atresia and Metabolic Disease do better

at 5 years but no one gets to chose the disease they have.

Tim R

[Guest guest]

> Can anyone please direct me to a site with statistics for the survival

> rate for people with only PSC?

http://www.optn.org/data/ has national Survival by Recipient Diagnosis

Category that comes close to PSC survival data. It is mixed in with

PBC and Choles Disease, since the Cholestatic Liver diseases are:

CHOLESTATIC LIVER DISEASE/CIRRHOSIS

Primary Biliary Cirrhosis (PBC)

Sec Biliary Cirrhosis: Other Specify

Sec Biliary Cirrhosis: Caroli's Disease

Sec Biliary Cirrhosis: Choledochol Cyst

Choles Liver Disease: Other Specify

PSC: Other Specify

PSC: Ulcerative Colitis

PSC: No Bowel Disease

PSC: Crohn's Disease

The Cholestatic liver diseases have a higher survival rate than

average. At 5 years it is 80.1% vs 74.3% for patients in general with

a primary transplant. Biliary Atresia and Metabolic Disease do better

at 5 years but no one gets to chose the disease they have.

Tim R