Transplant Evaluation - What to expect
We received a call today from Mayo-Jax saying our referral had been approved for transplant evaluation and to schedule an appointment. We were told to expect to say up to 3 weeks for testing every day, the entire day. We were not expecting that long of an evaluation and told them we would call back tomorrow after we looked into travel/lodging arrangements. We will plan to stay the entire 3 weeks but just wondering what the general time frame it was for most people. Did it usually take the entire three weeks? And can someone give me an idea of the battery of tests/evaluations that will be included. Thanks!
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@rosemarya I guess I have a different kind of perspective. You see, I've been told my kidney disease will not let me have a transplant as it is autoimmune, so a transplanted organ would get the same issue as my native kidneys do. So I am under even more duress to make sure I keep healthy, and dialysis would be my endpoint. I always have been an information junky, so going through this transplant with my husband has been educational, and I have learned an awful lot! It helps me in being a mentor and being able to answer some questions from members.
Ginger
@rosemarya
This is an old message I found. For some reason I stopped getting my connect messages. Please send back a message so I can try to get back in the loop. Missing all of you...
@jeanne5009 Hi here is your reply.
@jeanne5009, I will get this fixed for you today.
@jeanne5009, Hi, Jeanne. I hope that you are connected. I look forward to hearing from you.
Is an organ transplant in your future?
I kept a journal that began as a record of my procedures and doctor visits for billing purposes. Over time it became a journal of my transplant experience. Looking at it today, I can "see" how I was feeling without even reading the words! ie Sometimes I wrote sentences and sometimes I jotted words. And Ohhh! the handwriting and spelling of the medical terms is interesting!
Today, I decided to open up the journal: I reminded was that on Nov. 18, 2008, I was added to the UNOS organ transplant list for a liver. That is why Thanksgiving has always been a landmark in my transplant journey, it was the beginning of my official wait. I am certain that my mind was spinning with all of the details, tests, and questions that were still fresh in my memory.
Are you in the process of being evaluated for an organ transplant? What is your biggest concern? What questions would you like to ask of those who have already been evaluated?