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!

@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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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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@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?

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@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!

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@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!

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@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!

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

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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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@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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@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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@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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@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 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.

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@racing212

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

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@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.

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@cehunt57

@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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@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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@gaylea1

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.

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@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?

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@rosemarya

@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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@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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