I have recently been diagnosed with PSC. I am trying the Autoimmune Protocol diet and was wondering if anyone else has tried this. If so, have you had any luck? Also, I was wondering if I should look ahead at finding a hepatologist. My GI doctor never mentioned one as of yet. Additionally, he told me that having a live liver transplant does not work. I have read on this site of people who have had live donor transplants. I am wondering if I need a new GI. Thanks for the information.
GCS,
Thanks for your post. Regarding your question about a hepatologist, that is a definite must with PSC. I encourage you to find a good one at a major transplant hospital and let he/she care for you throughout your journey with PSC. Once I went under the care of a hepatologist I never returned to a regular GI again. They will be the best for treating the disease and be in the best position to get you on the transplant list when/if it comes to that. Regarding the GI’s comment about a liver transplant does not work, he doesn’t know what he’s talking about. If it didn’t work for me I would have died five years ago. Don’t let such talk scare you and stay away from any liver cleansing diets or potions/formulas you read or hear about. The only real cure for PSC at this moment is transplant. Yes, the medications like Vancomycian, URSO, etc. give you a better quality of life, yet they are not a cure in the finality of it. Don’t let this discourage you, we are here for you and will do our best to help in any way. Finally yes, run as fast as you can from your GI to a good hepatologist with a transplant hospital. If you need help finding one send us your city/state and we can get recommendations. The very best to you.
Mark
PSC 2011 / Liver Transplant 2015
Thank you for your reply. I guess I should have clarified in my post a little better. My Gi said that when the time came for a liver transplant, I would need one from a cadaver donor and not a living donor. I have seen on here where some have had living donor transplants. Also any advice for a good hepatologist would be appreciated. I live near Peoria Illinois.
GCS,
From what I am finding it looks like Northwestern Medical in Chicago has some of the best ratings according to one search I did. Take a look at these links. I’m not finding a transplant hospital in Peoria. If you have Blue Cross insurance, at least my policy has a provision if the transplant center is more than 2 hours from home they will pay for lodging and parking up to $10,000. That would be helpful especially after transplant as you have to stay near the hospital for 30 days at least in my case.
Here’s the link for their transplant center. Once you go here you will see the find a doctor link as well. If you will uncheck the neprology option on the left it will eliminate those doctors in the search. https://www.nm.org/conditions-and-care-areas/organ-transplantation/liver-transplantation. I’d encourage you to schedule yourself an appointment with the transplant department and they will connect you with the best hepatologist that handles PSC at their center. Most transplant centers will let you self-refer. Just call and inquire.
https://www.nm.org/conditions-and-care-areas/organ-transplantation/liver-transplantation
Mark
Loyola university hospital in Maywood, IL is also a very good hospital. You can try that one also. They have a very good program.