duke transplant

[mwinston87]

i have an appointment in november at duke to do the whole eligibility testing for transplant. wondered if there were any suggestions from people about how to best prepare for being down there. is there any stuff they dont tell you at all these meetings and things that you figured out on your own by doing the process? also how long did you wait between being put on the list and actually having the transplant?

 

[cftransplant]

I had half my test at Duke and the other test at UNC. I had a TX at Duke. They are up front and not into games. You go in for test, a rather hectic couple of days. Nothing you can prepare for or any tricks. The place is large and plan on going all over the hospital and clinic (at least 13 years ago). Prepare some questions for the doctors and staff. Wear comfortable cloths, and plan on waiting.

I waited around a year, as things became serious I moved to Duke and had a TX within a couple of months. They will want you at the center for living (exercise) prior to and post TX (go check the gym out).

CF 62 cepacia TX 12.5 years out

 

[PinkPigg]

Hi Martha. I will be at Duke this November too. My evaluation is Nov 26-30. This is my second time to be evaluated by Duke. After my first evaluation I was diagnosed with rectal cancer and have not been eligible to be listed again until now.

The evaluation process is quite hectic. By the end of the day I was pretty wiped out. During our visit we also spent some time looking into apartments, extended stay hotels, etc in case they wanted to list me and I had to relocate. I would definitely bring a book to read for times you have to wait. Also, bring some blank paper to take notes. It might be a good idea to have a snack (granola bars, etc) in case you get hungry and don't have time between appointments to go to the cafeteria.

I was very impressed by everyone I met during the evaluation. Duke really has an excellent program. Their median wait time is 12 days which is amazing. They also have great survival statistics post-transplant. You can find out more info on their website: http://www.dukehealth.org/services/transplants/programs/lung and find statistics for all programs at http://www.srtr.org/csr/current/Centers/TransplantCenters.aspx?organcode=LU

Also, there is a great Facebook group for Duke pre and post transplant people. http://www.facebook.com/groups/115698875172944/ It is an excellent source of info.

Good luck with your evaluation.

Steph Rath