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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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I had my evaluation via telephone the beginning of June. All seems to be OK. I'm still having blood drawn once a month though. My ERCP is scheduled for June 22nd so I'll be in hospital for that. I don't have too many worries about Covid at University Hospital but rather the outcome of the ERCP. Praying I won't have pancreatitis again. I don't want to spend a week in hospital.
@racing212, I am happy to hear from you. These past months have been quite stressful for all of us, and I bet that you have had one less thing to be concerned about by being able to stay local. Have you been able to go out to get labs drawn? Do they get sent to Mayo, or dis your local doctor monitoring you?
I hope your HE has been under control.
@cehunt57, I just got home from Mayo for my annual evaluation. I have every confidence that Mayo will be there when you need them, just as they were there for me and countless others when we needed them. I love the care I get from Mayo as a post transplant patient. My local doctors care for me and can contact Mayo when /if necessary. I travel to Mayo yearly for my post transplant evaluation.
It sounds like a good thing that your inactivation is due to you doing well enought for now. Your attitude and your patience are admirable as you must surely be taking good care of yourself. That will be to your advantage after trasplant surgery.
@cehunt57, it is so good to hear from you. I hope that as the word about living donation is spread that a donor will be found.
How did you learn that you were inactivated? Will you have to be reevaluated?
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2 Reactions@gaylea1, I'm getting caught up and want to send you prayers for a safe trip and for a successful ERCP.
Do you know if you be having a stent removed or replaced? Are any precautions being considered due to your past pancreatitus?
@rosemarya when I was there (Mayo Rochester) in October 2019 we discussed the UNOS listing and decided then that I would switch from active to inactive. There is a kidney function lab called GFR that indicates the percentage function of your kidneys. When that number is 20 or less you are eligible to be evaluated/considered for transplant. Mine has bounced around from 14 - 42 over the last 4 years. It was 24 last October when the listing was changed to inactive. I was first evaluated in 2016 and have been back yearly for a review evaluation since then. I see my local nephrologist in September. If everything continues to be stable perhaps this year’s Mayo trip won’t be necessary.
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2 ReactionsThey get sent to mayo. And I've been to the hospital a couple times.
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1 Reaction@rosemarya Hi! Im so hapoy to connect with you! I think that the stent is to be removed but they won't know until I get there. They can promise me nothing as to the outcome whether I get pancreatitis or not. I'm praying that I don't get it yet again. It is so unbelievably painful. I don't want another extended hospital stay as I'm put into a room to recover not necessarily transplant friendly. The surgeon doing the ERCP is the head of his department and works mainly on transplant patients. Thus said, there are no guarantees. I just pray they give me enough sedation so I don't had to go through the nightmare that I've been through before...being awake and feeling everything. 🙏🙏🙏
I have been assign my 'contact' at Mayo Scottsdale but am awaiting (rather impatiently) for them to begin my evaluation. I've had a living donor in the wings since early March when 'elective surgeries' were shut down here in AZ. Now with the drastic increase in Covid cases here, I worry that delays will occur again. How 'old' is too old for a donor? My older brother has agree to donate but he is 73. I know that's putting the cart before the horse since I don't know if I'm even a viable recipient.
@dhelmstetter There is a growing body of evidence that seems to indicate upper aged donors can successfully donate a kidney. It is their health and mental evaluations that decide, not necessarily age. The testing performed on both donor and recipient is extensive, and the transplant team wants both parties to be able to undergo the procedures successfully.
I hope you do not have to wait much longer to start the evaluation process!
Ginger
I just finished a questionaire this afternoon on the phone. Looks like with the backlog from COVID, they might not start the evaluations until AUGUST! Yikes! I'm growing impatient!!