I am trying to figure out where the best place to be for good care and for increase transplant chances and success. I have been looking at the Scientific Registry of Transplant Recipients, but their data is not too user friendly. http://www.srtr.org/opo/Default.aspx . Anyone have any resources for this topic?
Dear Cat:
The MAYO Clinic in Jacksonville, Florida does a huge volume, good success rate, and has a relatively low time until transplant. They are, however, very selective as to whom they place on their list.
Good Luck and stay strong,
EAD3
How is your search going, Cat?
Planning to discuss with Dr. at next appointment how far out it is before we pursue getting on a list. Gosh, to move seems insurmountable when one is trying to control stress. We live in the northwest, so it isn’t horrible here as far as wait times. Just weighing out so many options right now.thanks for asking. Would love to be at the Mayo somewhere, but just not sure about a move, new residency, all the changes, retirement, jobs, insurance, etc. Wish I could wave my magic wand and get all the “right” answers.
Dear Cat,
It is a very "sticky wicket." No magic wand available! I could have used one for all of the complications I had.
It would be nice for you to live within one hour of the medical center you choose.
Best Wishes!
EAD3
Cat Flower said:
Planning to discuss with Dr. at next appointment how far out it is before we pursue getting on a list. Gosh, to move seems insurmountable when one is trying to control stress. We live in the northwest, so it isn't horrible here as far as wait times. Just weighing out so many options right now.thanks for asking. Would love to be at the Mayo somewhere, but just not sure about a move, new residency, all the changes, retirement, jobs, insurance, etc. Wish I could wave my magic wand and get all the "right" answers.
Northwestern Memorial Hospital, Chicago , Il Kovler Organ Transplantation Center
675 N. St. Claire, Suure 1900
Chicago, Illinois 60611
Dr. Steven Flamm(Best in the business)
Treated Walter Payton(Chicago Bears)
Sorry to everyone, I haven’t posted for so long. Been so busy. Im in remission Currently. Praise God. Liver numbers are all good. Häving some Fatigue. Crazy how you can be so sick a year ago . Critical. To being in great shape. PSC is one crazy illness. Love you all, and appreciate all your help. Thank you.
You are trying to hard to to control and find the perfect situation. My advice is to find a good transplant team near where you live. It is best to keep your life as normal as possilbe. Figuring out where best to move and live is stress you don't need.
Payton... thanks. Very good advice. Stress is not something needed, for sure. I appreciate the reminder.
Hi Dophin5,
It is easy for me to say this in hindsight. My transplant was successful, but you are still facing the prospect. Good luck to you and keep us all updated as time passes.
Dolphin5 said:
Payton... thanks. Very good advice. Stress is not something needed, for sure. I appreciate the reminder.
It sounds like we are in about the same situation.I live in New England and am listed at Massachusetts General Hospital in Boston. New England transplants at such high MELD scores that the doctors have pretty myuch told me they will not be able to get me the organ they need. I spent last Spring and summer at the Mayo Clininc in Jacksonville and was very impressed with their transplant department.I returned home to Rhode Island in the fall to spend time with my family because my MELD score was hovering around 22 and that is not high enough to get a transplant at Mayo. After spending the winter in and out of the hospital my doctors are now recommending that I go out to Indiana University medical center in Indianapolis because they believe they have a more aggressive program there than they do in Jacksonville. Still trying to decide what to do, but I need to make up my mind quickly and go somewhere.
how you doing with the process, ej?
ej said:
It sounds like we are in about the same situation.I live in New England and am listed at Massachusetts General Hospital in Boston. New England transplants at such high MELD scores that the doctors have pretty myuch told me they will not be able to get me the organ they need. I spent last Spring and summer at the Mayo Clininc in Jacksonville and was very impressed with their transplant department.I returned home to Rhode Island in the fall to spend time with my family because my MELD score was hovering around 22 and that is not high enough to get a transplant at Mayo. After spending the winter in and out of the hospital my doctors are now recommending that I go out to Indiana University medical center in Indianapolis because they believe they have a more aggressive program there than they do in Jacksonville. Still trying to decide what to do, but I need to make up my mind quickly and go somewhere.
Hi, Dolphin 5,
Barnes Hospital in St. Louis has been transplanting some patients with low 20's MELD scores. I am 19 months post-op transplant and other than needing a kidney transplant, I am doing well. Barnes helped me weather a number of serious complications. You probably would have to move to the St. Louis area.
Good health and good luck to you!
EAD3