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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!

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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Jun 16, 2018
In reply to @bamagirlgina "@jodeej - Thanks for the information. Hopefully we will not have to stay the entire 3..." + (show)
@bamagirlgina

@jodeej - Thanks for the information. Hopefully we will not have to stay the entire 3 weeks. I did contact Gabriel House today and right now the have availability...hopefully they will still tomorrow once I call about the appt. Trying to get an appt date at Mayo and Gabriel House in tandum is tricky. We considered taking our travel trailer over but the closest campground was at least 30 minutes drive away. Since Gabriel House has shuttle service that would be one less stressor to have to worry about (not to mention dragging the camper over, setting it up, etc.) Fingers crossed Mayo still has April 11 open when I call in the morning and that after that Gabriel House still has availability.

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@bjcjke you are off to a good start already. As a potential living kidney donor I’m guessing you have already cleared the health history questionnaire or some other intake process, other forms and some initial blood work. Were you assigned a pre-transplant coordinator? That would be the person to contact regarding scheduling for the next steps of pre-transplant donor evaluation. @mauraacro made a good point about the possibility of delays. Mayo calls this “deferrals”. It can happen on either end, the recipient &/or donor. It simply means “not now, not yet”; such as more information/testing is needed; something needs to be treated, addressed, changed; the timing is not quite right ..... etc. Mayo makes sure that everything is optimal for everyone involved. Each patient is dealt with individually with his/her own care team. This is to customize your care, protect your privacy, avoid any conflicts of interest and so on. If there is a hold up of some sort on your friend’s end, Mayo won’t tell you (unless you’ve both signed authorization forms to the contrary). Contact your coordinator to get further explanation and answers. If you don’t have a coordinator, there should be living donor team contact info at Mayo Phoenix to point you in the right direction.

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jeanne5009 | @jeanne5009 | Jun 22, 2018
In reply to @jodeej "@bamagirlgina when my husband went for his transplant eval it was 4 full days. I believe..." + (show)
@jodeej

@bamagirlgina when my husband went for his transplant eval it was 4 full days. I believe he had 23 appointments that week! It was very tiring. They draw blood, do renal testing, CT scans, MRI, EKG's, lung function..you name it, they test it. They have to be sure you are able to handle the surgery and that you don't have anything else going on. They don't want any surprises. We were able to stay at the Gift of Life house in Rochester while he was being tested. It helps save on lodging, plus we are able to cook our own meals and not have to eat out all the time. Another plus of staying there are all the other people that understand exactly what you are going though.
I wish you the best of luck!
JoDee

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@rosemarya
I have completed my evaluation at Mayo Jax and have recieved my sentence..lol..
I indeed have Stage 4 cirrhosis with some decompensated factors. The biggest reason to wait for listing is the Meld score that is only 7.
I was expecting this, so no shock value incurred. They will watch me every 6 months or sooner if needed.
I was so impressed with the facilities and the caliber of professionals there. After 23 vials of blood and too many tests to count I am home digesting this new journey I am beginning.
Please, anyone, feel free to ask me any questions you may have about the Evaluation Process at Mayo Jax. It was an overwhelmingly inspiring trip and the start of new adventures.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 26, 2018
In reply to @jodeej "@bamagirlgina when my husband went for his transplant eval it was 4 full days. I believe..." + (show)
@jodeej

@bamagirlgina when my husband went for his transplant eval it was 4 full days. I believe he had 23 appointments that week! It was very tiring. They draw blood, do renal testing, CT scans, MRI, EKG's, lung function..you name it, they test it. They have to be sure you are able to handle the surgery and that you don't have anything else going on. They don't want any surprises. We were able to stay at the Gift of Life house in Rochester while he was being tested. It helps save on lodging, plus we are able to cook our own meals and not have to eat out all the time. Another plus of staying there are all the other people that understand exactly what you are going though.
I wish you the best of luck!
JoDee

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@jeanne5009, I hope that you are getting caught up on some much needed rest. I, like you, was impressed with the level of compassion, knowledge, and skill that I received (and still do) at Mayo. You are beginnng a new adventure for sure! I wish you all the best as you continue to move forward.

I do have one question for you about your caregivers - Were all of you able you schedule a meeting together with the transplant team? What do you think they learned about your health situation that will help them to understand your future and their roles?
Rosemary

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jeanne5009 | @jeanne5009 | Jun 27, 2018
In reply to @jodeej "@bamagirlgina when my husband went for his transplant eval it was 4 full days. I believe..." + (show)
@jodeej

@bamagirlgina when my husband went for his transplant eval it was 4 full days. I believe he had 23 appointments that week! It was very tiring. They draw blood, do renal testing, CT scans, MRI, EKG's, lung function..you name it, they test it. They have to be sure you are able to handle the surgery and that you don't have anything else going on. They don't want any surprises. We were able to stay at the Gift of Life house in Rochester while he was being tested. It helps save on lodging, plus we are able to cook our own meals and not have to eat out all the time. Another plus of staying there are all the other people that understand exactly what you are going though.
I wish you the best of luck!
JoDee

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@rosemarya
Yes...Im resting if anyone can ...during the busy summer and approaching holiday. I get to visit Mayo Jax again next Monday for my Nuitrition meeting. Looking forward to that!
I've been thinking about it and I've concluded that walking in the doors of Mayo and just walking the grounds is what I can imagine as heaven with angels there to help you. Everyone is only interested in you. Very peaceful.
Yes we all made it and my daughter and friend felt the same way. Somewhat ov erwhelmed I'd say. Good bonding time for all of us with an educated purpose for being there.
Gotta run to see my PVP to review all of it with him.
Best wishes for a safe 4th!

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racing212 | @racing212 | Feb 22, 2020

When i had my evaluation it 5 days here in Rochester it was the longest week and we did a lot of walking. The do have wheel chairs

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1 reply
beckyy39 | @beckyy39 | Mar 1, 2020
In reply to @racing212 "When i had my evaluation it 5 days here in Rochester it was the longest week..." + (show)
@racing212

When i had my evaluation it 5 days here in Rochester it was the longest week and we did a lot of walking. The do have wheel chairs

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I have my liver transplant evaluation starting March 10 through the 24th at Mayo Clinic Jax, and would love to know what to expect. It has been a difficult week for me not knowing what the future holds, and knowing others are with me on this journey helps tremendously.

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5 replies
gaylea1 | @gaylea1 | Mar 1, 2020
In reply to @beckyy39 "I have my liver transplant evaluation starting March 10 through the 24th at Mayo Clinic Jax,..." + (show)
@beckyy39

I have my liver transplant evaluation starting March 10 through the 24th at Mayo Clinic Jax, and would love to know what to expect. It has been a difficult week for me not knowing what the future holds, and knowing others are with me on this journey helps tremendously.

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@beckyy39 everyone's journey is different. I got through major anguish thanks to this caring group. I continually sought advice about all my pre transplant symptoms. I had them all! I was given great tips and everyone eased my way through a very rough 2 1/2 years. Please continue posting on your progress as everyone is here to help.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 1, 2020
In reply to @beckyy39 "I have my liver transplant evaluation starting March 10 through the 24th at Mayo Clinic Jax,..." + (show)
@beckyy39

I have my liver transplant evaluation starting March 10 through the 24th at Mayo Clinic Jax, and would love to know what to expect. It has been a difficult week for me not knowing what the future holds, and knowing others are with me on this journey helps tremendously.

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@Becky39, Have you received your appointment schedule yet? Is this your first time to be at Mayo JAX?

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amyintucson | @amyintucson | Mar 1, 2020
In reply to @beckyy39 "I have my liver transplant evaluation starting March 10 through the 24th at Mayo Clinic Jax,..." + (show)
@beckyy39

I have my liver transplant evaluation starting March 10 through the 24th at Mayo Clinic Jax, and would love to know what to expect. It has been a difficult week for me not knowing what the future holds, and knowing others are with me on this journey helps tremendously.

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Hi Becky

I had my evaluation at Mayo, Phoenix and they were able to schedule everything within 1 week as I lived 2+hours away and was staying in a hotel.

Monday AM was a meeting with a transplant coordinator with other patients there for a transplant assesment. They gave an overview of the process to listing, what would happen when a liver was avaiable and talked about the finance end. Made the rest of the appointments make a little more sense, though I was still overwhelmed. Thank goodness my hubby was there to hear everything.

For the rest of the time starting that afternoon, I had liver/GI doctor appts galore plus blood tests daily, urine collections. Had dental panoramic xrays, gynecologist visit, psychiatric evaluation, infectious disease, heart tests, liver and kidney ultrasounds and probably more i forgot about. It was 4 solid days starting around 8 am until 4-5 pm and a half day on Friday.

I hope this helps a little bit. Let us know when you get the schedule. By the way, my eval was 3 years ago and I received a transplant a little over a year ago.

Amy

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 1, 2020
In reply to @beckyy39 "I have my liver transplant evaluation starting March 10 through the 24th at Mayo Clinic Jax,..." + (show)
@beckyy39

I have my liver transplant evaluation starting March 10 through the 24th at Mayo Clinic Jax, and would love to know what to expect. It has been a difficult week for me not knowing what the future holds, and knowing others are with me on this journey helps tremendously.

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Hey @beckyy39, watch this video with Michael Womack, LCSW, a social worker at Mayo Clinic in Florida. He talks about what to expect at your first evaluation for a liver transplant. Yes, he really is that nice!
https://connect.mayoclinic.org/webinar/facebook-live-what-to-expect-when-youre-expecting-a-liver-transplant/

(Click the "full screen" icon to see his whole head.)

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