Question about Living donor transplant testing/evaluation

Posted by luv2cUsmile @luv2cusmile, Dec 1, 2020

Can a family member do the initial blood work testing from out of state to see if they're a good match, or must this be done in the same state as the patient?

@cowguy

Hi, I am new to Mayo Connect, so I hope I am posting this on a place where I can receive a response.
An acquaintance of mine needs a kidney, and I am a possible donor in a very preliminary way, as our blood types match. Can someone give me an idea of what further tests are required for a kidney donation, and especially, would I likely have to travel to Mayo Rochester- my nearest transplant center-for the tests? I am a self-employed dairy farmer in west central Wisconsin, so travel is difficult. I would be grateful for any input. Thanks!

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@cowguy

It's pretty awesome that you would consider stepping up and seeing if you are a match for your cousin. You sound pretty amazing already!

At this point the decisions are pretty much yours, you are calling the shots, my living donor was able to do her testing over two days in Rochester but you get to partner with the Mayo team to decide what works for you. After you fill out the online form they will send you a blood kit and assign you a nurse who will answer all of your questions. The nurse can help you arrange whatever schedule to whatever works with your life. At that point your donors insurance typically covers all costs for you (minus gas and lodging) all of your results will be kept between you and your Mayo team and NEVER shared with your cousin unless you say something.

Hope this helps.
@jolinda

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@jennifer0726

Hello Cowguy,
My cousin donated a kidney to me at Mayo last December. I am sure you would need initial blood work done locally with a kit sent from Mayo, as well a 24 urine test. If you pass those screenings, they would schedule many tests, some that could be held by zoom meetings. It would be best you call Mayo Transplant Center and ask them if that is where the transplant would take place. They will be eager to help. Different transplant centers have different requirements, but mostly they want to make sure you are healthy enough to donate. Your health will be a priority. You can actually learn quite a bit on their website. https://www.mayoclinic.org/departments-centers/transplant-center/living-donor-transplantation/gnc-20203911
Thank you for being willing to step up!
Jennifer

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@cowguy – I have been through the donor process at Mayo. Many preliminary tests can be completed locally before the testing AT Mayo. Some of your travel expenses may be covered by the recipient's insurance. You should also check with NLDAC – National Living Donor Assistance Center. Talk to the Mayo transplant center about application for reimbursement of your travel expenses through NLDAC. If you can get this approved before you have to travel, they may be able to cover travel, lost wages, and dependent care expenses related to your evaluation trip, transplant, and follow-up visits. See http://www.livingdonorassistance.org for more information and be sure to ask the folks at Mayo!

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@bru2

@cowguy – I have been through the donor process at Mayo. Many preliminary tests can be completed locally before the testing AT Mayo. Some of your travel expenses may be covered by the recipient's insurance. You should also check with NLDAC – National Living Donor Assistance Center. Talk to the Mayo transplant center about application for reimbursement of your travel expenses through NLDAC. If you can get this approved before you have to travel, they may be able to cover travel, lost wages, and dependent care expenses related to your evaluation trip, transplant, and follow-up visits. See http://www.livingdonorassistance.org for more information and be sure to ask the folks at Mayo!

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@bru2 Thank you for this information! I am sure it will help others looking for information on being a living donor.

I see this is your first post, and you have been a member since Sept 2020. Was going through the living donor evaluation successful for you? When you first came to Mayo Clinic Connect, what brought you here?
Ginger

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@cowguy

Thank you for the feedback! This whole process seems daunting, but I will persevere.

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Cowguy, we have several donors who have shared their stories, tips and information on Connect. See these discussions as you continue your journey of giving.
– Kidney transplant – The Journey from the Donor's Side https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/
– Donated my Kidney: May 20, 2020 https://connect.mayoclinic.org/discussion/wed-may-20-20-kidney-donation/
– From a Living Donor: One year later, what is your life like now? https://connect.mayoclinic.org/discussion/a-post-donation-check-in-one-year-later/

@bru2, I look forward to your experience, knowledge and support being added to the forum. Welcome.

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Well, I completed the Health History Questionaire, and to my disappointment, the Living Donor Team informed me that, due to some factors in my health history, I am not eligible to be a donor at this time. I did email them back as to whether they could provide me with a fuller explanation of their decision, as they provided no specific details.
At any rate, it appears I am out of the running.
I would like to express my thanks to the several people on this forum who were kind enough to give me help and direction during the very early stages of the donor process.

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@cowguy

Well, I completed the Health History Questionaire, and to my disappointment, the Living Donor Team informed me that, due to some factors in my health history, I am not eligible to be a donor at this time. I did email them back as to whether they could provide me with a fuller explanation of their decision, as they provided no specific details.
At any rate, it appears I am out of the running.
I would like to express my thanks to the several people on this forum who were kind enough to give me help and direction during the very early stages of the donor process.

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@cowguy It is disappointing to hear, isn't it, when you want so much to help.

Last December my sister offered to be evaluated as a potential kidney donor to me. It was an honor to hear that from her, but ultimately we could not proceed because I am an active cancer patient. I did ask her to consider going ahead with a altruistic donation, but she reneged on that.

Your posts have given people food for thought, had others step up with valuable information, so that in itself is a win-win. And your situation reminded people that wanting to do a donation is not always feasible.
Ginger

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@cowguy

Well, I completed the Health History Questionaire, and to my disappointment, the Living Donor Team informed me that, due to some factors in my health history, I am not eligible to be a donor at this time. I did email them back as to whether they could provide me with a fuller explanation of their decision, as they provided no specific details.
At any rate, it appears I am out of the running.
I would like to express my thanks to the several people on this forum who were kind enough to give me help and direction during the very early stages of the donor process.

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Cowguy, I agree with @gingerw. I know this is disappointing, but you are now an informed advocate for organ donation. You can help encourage others to consider organ donation and you'll know where to send them if they would like to meet others who have been there and where they can find more information.

Organ donation isn't the only way you can help. I'd love for you to add your thoughts and ideas to this discussion:
– What ways you can help when you can’t be a living donor? https://connect.mayoclinic.org/discussion/what-ways-you-can-help-when-you-cant-be-a-living-donor/

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As the world turns, my saga is not yet over. I ended up talking to a very competent nurse on the Living Donor Team, as I wanted to know the reasons for my rejection. They are, first, I periodically take ibuprofen, and second, at long intervals I have used meglimine flunixin to treat joint pain. (This is -ahem- a livestock drug. The nurse did not seem to share my belief that "cows are mammals, I'm a mammal, so no problem"). At any rate, if I stay off those two for a month, my potential donation status could be reconsidered.

A logistical problem I would need to address is that I live by myself, and my cat doesn't drive, so post-donation care is something I would have to think through carefully.
Just an update, as there are members here who have been helpful to me as things have gone along.

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@cowguy

As the world turns, my saga is not yet over. I ended up talking to a very competent nurse on the Living Donor Team, as I wanted to know the reasons for my rejection. They are, first, I periodically take ibuprofen, and second, at long intervals I have used meglimine flunixin to treat joint pain. (This is -ahem- a livestock drug. The nurse did not seem to share my belief that "cows are mammals, I'm a mammal, so no problem"). At any rate, if I stay off those two for a month, my potential donation status could be reconsidered.

A logistical problem I would need to address is that I live by myself, and my cat doesn't drive, so post-donation care is something I would have to think through carefully.
Just an update, as there are members here who have been helpful to me as things have gone along.

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@cowguy I am glad you pursued the reasons for the rejection. As someone formerly involved in training racehorses, I am very familiar with using some things labeled for animals, on myself, especially muscle rubs! Will you be able to stay off those for a couple of months, to be reevaluated? Your honesty with the transplant team must be something they found positive.

Do you have friends or family in the area to give you a hand if you are cleared to donate? Any co-op nearby who can pitch in?

Here is an article from Mayo Clinic that speaks to donor nephrectomy [kidney donation] and gives guidelines for post-donation as well. https://www.mayoclinic.org/tests-procedures/donor-nephrectomy/about/pac-20384867

How is your friend doing these days?
Ginger

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@gingerw

@cowguy I am glad you pursued the reasons for the rejection. As someone formerly involved in training racehorses, I am very familiar with using some things labeled for animals, on myself, especially muscle rubs! Will you be able to stay off those for a couple of months, to be reevaluated? Your honesty with the transplant team must be something they found positive.

Do you have friends or family in the area to give you a hand if you are cleared to donate? Any co-op nearby who can pitch in?

Here is an article from Mayo Clinic that speaks to donor nephrectomy [kidney donation] and gives guidelines for post-donation as well. https://www.mayoclinic.org/tests-procedures/donor-nephrectomy/about/pac-20384867

How is your friend doing these days?
Ginger

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@gingerw ,
Thank you for your reply, and I apologize for my belated response.
Caregiving and life management after donation would be difficult, although not impossible. It would require careful planning well ahead.
The Living Donor nurse told me that if I stayed off ibuprofen and Flunixin for a month, my donor status could be reevaluated. So we shall see….the process is very thorough, as it ought to be. Somewhat daunting for me.

My friend is stable as of now. I forget the name of the kidney problem he has. As I understand the situation, as time goes forward, his treatment options shrink and the need for a new kidney becomes more urgent.

Thank you again for responding, and for the links.
@cowguy

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@cowguy

@gingerw ,
Thank you for your reply, and I apologize for my belated response.
Caregiving and life management after donation would be difficult, although not impossible. It would require careful planning well ahead.
The Living Donor nurse told me that if I stayed off ibuprofen and Flunixin for a month, my donor status could be reevaluated. So we shall see….the process is very thorough, as it ought to be. Somewhat daunting for me.

My friend is stable as of now. I forget the name of the kidney problem he has. As I understand the situation, as time goes forward, his treatment options shrink and the need for a new kidney becomes more urgent.

Thank you again for responding, and for the links.
@cowguy

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You're welcome! And, please come back to let us know how everything progresses, okay? I know you are heading into a busy time as you get prepared for colder weather and the increased duties that entails.
Ginger

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