Transplant Evaluation - What to expect

Posted by bamagirlgina @bamagirlgina, Mar 12, 2018

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!

Interested in more discussions like this? Go to the Transplants Support Group.

@rosemarya

@2011panc, Thanks for sharing your uplifting message of hope and faith. Your words are powerful. I hope you are doing well.

@dhelmstetter, I have never met anyony who carves alabaster! If you want some inspiration, I encourage you to the discussion > Art-for-Healing
https://connect.mayoclinic.org/discussion/art-for-healing/
It does get wordy, however if you scroll through you will be able to see pictures of art work that others have posted. Introduce yourself; share a picture; ask a question; make a comment - See you there?

@gaylea1, I struggled in my mind right along with you because I, too, had experienced a difficult pretransplant period several years earlier. Your words are so much appreciated.That is why I do what I do: I don't want anyone to ever feel alone while going thru an organ failure and a transplant. Thank you for what you are doing to support others - you are now an expert by experience.

@cehunt57, Thanks for filling me in on how your local providers amd Mayo are able to meet your needs. That is how medical care should happen - coordination plus communication with the patient's need in the forefront . Prayers as you continue your journey. Please keep us up to date, and stop in anywhere, anytime you want to chat.

@gingerw, Your husband is an amazing guy, but I guess you already know that! Such creativity and determination is admirable, and doubly so from my perspective as having been on dialysis for just a short while. How was it for you as a caregiver with kidney issues, to go thru all of this?

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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

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@rosemarya

@racing212, Congratulations on the test results! Something is working for you right now. Did you get any good word related to the HE?
Others have mentionesd that they have had procedures delayed due to the Covid-19 and the potential volumes of patients.

Did you see the new discussion? - COVID-19 in Transplant Patients
https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/
You can click oin the blue link, and you will be there. I invite you to read and to add any of your own comments.
Be safe.

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@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...

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@jeanne5009

@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...

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@jeanne5009 Hi here is your reply.

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@jeanne5009

@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...

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@jeanne5009, I will get this fixed for you today.

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@jeanne5009, Hi, Jeanne. I hope that you are connected. I look forward to hearing from you.

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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?

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