1. < Transplants

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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JK | @contentandwell | May 30, 2020
In reply to @dhelmstetter "I'm caught up in the Mayo Scottsdale / Insurance verification hold for a kidney transplant. Very..." + (show)
@dhelmstetter

I'm caught up in the Mayo Scottsdale / Insurance verification hold for a kidney transplant. Very frustrating since all referrals went in before Covid. Now everything apparently has to be re-issued by my kidney doc. Meanwhile, I have two living donors in the wings awaiting my evaluation to see if I'm even a viable candidate for a transplant. The social worker at my dialysis center stands fast to that it may take 4 or more weeks for the paperwork to go through... It IS very frustrating. Any advice how I can expedite this process?

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@dhelmstetter I have no advice for you, I was a liver transplant recipient at Mass General, but I want to wish you a speedy process and that you will are a viable candidate. I hope too that one of your potential living donors will work out for you or in a paired exchange.

We will all be hoping for the best for you, and looking forward to hearing how things are going.
JK

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dhelmstetter | @dhelmstetter | May 30, 2020

Thank you and I'm trying to remain positive and hopeful! Having kidney failure has been stressful in itself - now to deal with the waiting... David

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 30, 2020
In reply to @dhelmstetter "I'm caught up in the Mayo Scottsdale / Insurance verification hold for a kidney transplant. Very..." + (show)
@dhelmstetter

I'm caught up in the Mayo Scottsdale / Insurance verification hold for a kidney transplant. Very frustrating since all referrals went in before Covid. Now everything apparently has to be re-issued by my kidney doc. Meanwhile, I have two living donors in the wings awaiting my evaluation to see if I'm even a viable candidate for a transplant. The social worker at my dialysis center stands fast to that it may take 4 or more weeks for the paperwork to go through... It IS very frustrating. Any advice how I can expedite this process?

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@dhelmstetter, I wish I could wave a magic wand to activate your insurance. Unfortunately I have no information, or knowledge of how the insurance policies work. One thing that I can share (and not what you want to hear) is that waiting, and more waiting is the way it is for us transplant patients. If it is any comfort at all, you are not alone with feeling as if the clock has slowed down.
This is probably equally frustrating for your interested donor candidates. Do you know if they have information about the living donor process? Here are the Living Donor and Recipient tool kits. https://connect.mayoclinic.org/page/transplant/

I had acute kidney failure, and was on dialysis for a few months before my liver/kidney transplant in 2009. I transplanted at Mayo Rochester and I can offer you a positive message - Once Mayo starts the evaluation process and the listing, they do not waste any time.

What do you do with your time now? Are you able to work, or carry on daily activities? What questions do you have about the evaluation and listing for transplant?

REPLY
1 reply
estrada53 | @estrada53 | May 30, 2020
In reply to @dhelmstetter "I'm caught up in the Mayo Scottsdale / Insurance verification hold for a kidney transplant. Very..." + (show)
@dhelmstetter

I'm caught up in the Mayo Scottsdale / Insurance verification hold for a kidney transplant. Very frustrating since all referrals went in before Covid. Now everything apparently has to be re-issued by my kidney doc. Meanwhile, I have two living donors in the wings awaiting my evaluation to see if I'm even a viable candidate for a transplant. The social worker at my dialysis center stands fast to that it may take 4 or more weeks for the paperwork to go through... It IS very frustrating. Any advice how I can expedite this process?

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I am thinking that perhaps you could ask Mayo, the insurance company and your kidney doc to hold a 3 way call to expedite the situation. Mayo - Phoenix - was willing to do this for me prior to my heart transplant. If not, consider the amazing outcome after your surgery- even if it is later rather than sooner - and that may relax you and provide some consolation. That's it!

REPLY
1 reply
dhelmstetter | @dhelmstetter | May 30, 2020
In reply to @estrada53 "I am thinking that perhaps you could ask Mayo, the insurance company and your kidney doc..." + (show)
@estrada53

I am thinking that perhaps you could ask Mayo, the insurance company and your kidney doc to hold a 3 way call to expedite the situation. Mayo - Phoenix - was willing to do this for me prior to my heart transplant. If not, consider the amazing outcome after your surgery- even if it is later rather than sooner - and that may relax you and provide some consolation. That's it!

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Thanks, that DOES help and is an ongoing mantra to deal with the frustration of waiting!

REPLY
dhelmstetter | @dhelmstetter | May 30, 2020
In reply to @rosemarya "@dhelmstetter, I wish I could wave a magic wand to activate your insurance. Unfortunately I have..." + (show)
@rosemarya

@dhelmstetter, I wish I could wave a magic wand to activate your insurance. Unfortunately I have no information, or knowledge of how the insurance policies work. One thing that I can share (and not what you want to hear) is that waiting, and more waiting is the way it is for us transplant patients. If it is any comfort at all, you are not alone with feeling as if the clock has slowed down.
This is probably equally frustrating for your interested donor candidates. Do you know if they have information about the living donor process? Here are the Living Donor and Recipient tool kits. https://connect.mayoclinic.org/page/transplant/

I had acute kidney failure, and was on dialysis for a few months before my liver/kidney transplant in 2009. I transplanted at Mayo Rochester and I can offer you a positive message - Once Mayo starts the evaluation process and the listing, they do not waste any time.

What do you do with your time now? Are you able to work, or carry on daily activities? What questions do you have about the evaluation and listing for transplant?

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Rosemary, yes, I passed on a folder of detailed info from Mayo to each possible donor - and INSISTED they read it before they agreed to this dangerous process. That didn't sway either! Now to get ME evaluated and then see if we're a match!

REPLY
tasher3433 | @tasher3433 | May 30, 2020

My very best wishes for you all to match! You have a great Army, there!

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 17, 2020

I was at Mayo Rochester last week, and I felt safe and secure because of all of the safe practices that the entire Mayo staff and the patients are following.
In conversations with my care team, I learned that transplant patient visits are increasing after the pandemic slowdown. UNOS (unos.org) reports that after monthlong decline in transplants performed each week in the United States, the numbers began to gradually increase.
How has this affected you?
Have you been reactivated? What are you hearing from your transplant center?
Where are you in your transplant evaluation ?
@beckyy39, @jeanne5009, @racing212, @brianna, @dhelmstetter, @estrada53, @gaylea1, @cehunt57

I extend a special WELCOME to new members. You are about to begin an amazing journey with ups and downs anfd twists and turns. How can we help you as you begin your own Transplant journey? What questions do you have?

I think we ALL look great in our masks! Don't you 😷

REPLY
4 replies
racing212 | @racing212 | Jun 17, 2020
In reply to @rosemarya "I was at Mayo Rochester last week, and I felt safe and secure because of all..." + (show)
@rosemarya

I was at Mayo Rochester last week, and I felt safe and secure because of all of the safe practices that the entire Mayo staff and the patients are following.
In conversations with my care team, I learned that transplant patient visits are increasing after the pandemic slowdown. UNOS (unos.org) reports that after monthlong decline in transplants performed each week in the United States, the numbers began to gradually increase.
How has this affected you?
Have you been reactivated? What are you hearing from your transplant center?
Where are you in your transplant evaluation ?
@beckyy39, @jeanne5009, @racing212, @brianna, @dhelmstetter, @estrada53, @gaylea1, @cehunt57

I extend a special WELCOME to new members. You are about to begin an amazing journey with ups and downs anfd twists and turns. How can we help you as you begin your own Transplant journey? What questions do you have?

I think we ALL look great in our masks! Don't you 😷

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I haven't been there since March. I go again in September or October

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1 reply
Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Jun 17, 2020
In reply to @rosemarya "I was at Mayo Rochester last week, and I felt safe and secure because of all..." + (show)
@rosemarya

I was at Mayo Rochester last week, and I felt safe and secure because of all of the safe practices that the entire Mayo staff and the patients are following.
In conversations with my care team, I learned that transplant patient visits are increasing after the pandemic slowdown. UNOS (unos.org) reports that after monthlong decline in transplants performed each week in the United States, the numbers began to gradually increase.
How has this affected you?
Have you been reactivated? What are you hearing from your transplant center?
Where are you in your transplant evaluation ?
@beckyy39, @jeanne5009, @racing212, @brianna, @dhelmstetter, @estrada53, @gaylea1, @cehunt57

I extend a special WELCOME to new members. You are about to begin an amazing journey with ups and downs anfd twists and turns. How can we help you as you begin your own Transplant journey? What questions do you have?

I think we ALL look great in our masks! Don't you 😷

Jump to this post

@rosemarya, thank you for the inquiry about my transplant evaluation. I was last at Mayo (Rochester, MN) in October 2019. I am post transplant pancreas (2005 from another transplant center) due to diabetes and have been evaluated at Mayo annually since 2016 for kidney transplant. I’ve been approved, accepted and listed for kidney transplant at Mayo in Rochester. I’ve also been looking for a living kidney donor during this time. Last year my listing was changed to inactive because I was told that I’m “too healthy for a transplant at this time”. Thank God I’m in pretty good shape for the shape I’m in! I’m thankful that I’m not on dialysis or in immediate need of transplant during these times. My local primary doc, endocrinologist and nephrologist are keeping track of me. I’m confident that Mayo will be there if and when more imminent transplant needs arise.

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