Living Donor Process

Posted by ek101085 @ek101085, Apr 11, 2019

Hello,

I was wondering if anyone is able to shed some light on the process of being a living donor. I had just completed the questionnaire a week ago today for my sister, the day she found out she had been approved for a transplant at the Mayo. We have not heard anything other than her receiving a letter confirming she was approved for transplant The email said I would be contacted within 5 days.. I'm assuming I'm just worrying and being impatient since it has only been a week. Just seeing if there was anyone out that that is able to provide some reassurance in the process. There wasn't anything I answered in the health questionnaire that I would thing would not me allow to be tested..at least I had thought so. Amy info would be greatly appreciated.

Thanks!!

@jdcowle5

I am early in the evaluation stage as a live donor for a kidney. I have signed the release authorization. I have a couple of questions as I proceed. Can anyone comment on the blood testing process? Do you send the kit back to mayo for processing? How long does it take to get results. Also, I have seen some conflicting information on returning to work post donating. I have seen as little as two weeks and as many as 6-8. Can anyone speak to returning to work? Thanks in advance for your help.

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Congratulations on your decision!
Mayo sent me a bloodwork kit with everything I needed for the draw & to ship it back. I took it to my Dr & it was picked up by FedEx for overnight delivery.
I went back to work about a month after my surgery. I feel like I could have gone back sooner but there was a 4 week lifting restriction and my job is very active. I think as is the case with any surgery, things vary from person to person. I do remember the nurse telling me they would rather say 6 weeks and have it be 4 than the other way around.
I had a million questions before my donation so if you think of more, ask away!

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@colleenyoung

@jdcowle5, you ask great questions about live kidney donation as you prepare for donation and are in the early evaluation stages, such as questions about he blood testing process and returning to work post donation. Luckily we've had some kidney donors who are recounted their experiences here on Connect and are always willing to answer questions.

You'll see that I moved your message to this existing discussion called "Living Donor Process" https://connect.mayoclinic.org/discussion/living-donor-process/ Click the link to read through past questions and answers.

The following discussions also offer stories and experiences of living donors like @mauraacro and @ek101085
– Kidney transplant: Thinking of becoming a donor https://connect.mayoclinic.org/discussion/kidney-transplant-3/
– Kidney transplant – The Journey from the Donor's Side https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

I'm tagging @keggebraaten regarding your specific question about returning the kit back to Mayo for processing. jdcowle, will you be a directed or non-directed donor (if you don't mind my asking)?

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@jdcowle5 – Thank you for considering living donation! As for the kit, there should be instructions inside the kit. Take it to your local lab, they will draw the blood and should ship it back to Mayo Clinic for you. If there are further questions while you are there (or before you go) you can contact our living donor phone line at 866-227-1569. As for your return to work, every patient is a little bit different. If you have a sedentary desk job, you can likely return sooner than someone who has a physical labor job. The average is 3-6 weeks, depending upon your type of work, your recovery, and any issues you may have after surgery. Your nurse coordinator can give you a better estimate once they see you in evaluation. If you have any further questions, let us know. And thanks again for considering donation! – Kristin

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@jdcowle5

I am early in the evaluation stage as a live donor for a kidney. I have signed the release authorization. I have a couple of questions as I proceed. Can anyone comment on the blood testing process? Do you send the kit back to mayo for processing? How long does it take to get results. Also, I have seen some conflicting information on returning to work post donating. I have seen as little as two weeks and as many as 6-8. Can anyone speak to returning to work? Thanks in advance for your help.

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Best of luck to you as you start this journey.

The first blood kit you send back typically takes less than a couple of days for you to see your results. I advise you download the Mayo app on your phone for you to view them. Thos would also allow you to review any results of all future tests and appointments at Mayo. It is very helpful!!

I had went in for my blood kit draw Monday morning. They had kept the package for them to send it out at Noon. I was able to review the test results the next day. Since I am.attemtping to donate for my sister. My care team nurse contacted me that Friday for me to schedule my 3 day eval down at Mayo.

I have completed the full eval and have been approved with contingency- I have to wait for the test results of a genetic test my sister had done a couple months back.

Let me know if you have any questions! I was in your shoes not that long ago!

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@colleenyoung

@jdcowle5, you ask great questions about live kidney donation as you prepare for donation and are in the early evaluation stages, such as questions about he blood testing process and returning to work post donation. Luckily we've had some kidney donors who are recounted their experiences here on Connect and are always willing to answer questions.

You'll see that I moved your message to this existing discussion called "Living Donor Process" https://connect.mayoclinic.org/discussion/living-donor-process/ Click the link to read through past questions and answers.

The following discussions also offer stories and experiences of living donors like @mauraacro and @ek101085
– Kidney transplant: Thinking of becoming a donor https://connect.mayoclinic.org/discussion/kidney-transplant-3/
– Kidney transplant – The Journey from the Donor's Side https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

I'm tagging @keggebraaten regarding your specific question about returning the kit back to Mayo for processing. jdcowle, will you be a directed or non-directed donor (if you don't mind my asking)?

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Thank you so much. If approved, I will be a directed and if not s blood match, most likely participating in a chain.

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@ek101085

Best of luck to you as you start this journey.

The first blood kit you send back typically takes less than a couple of days for you to see your results. I advise you download the Mayo app on your phone for you to view them. Thos would also allow you to review any results of all future tests and appointments at Mayo. It is very helpful!!

I had went in for my blood kit draw Monday morning. They had kept the package for them to send it out at Noon. I was able to review the test results the next day. Since I am.attemtping to donate for my sister. My care team nurse contacted me that Friday for me to schedule my 3 day eval down at Mayo.

I have completed the full eval and have been approved with contingency- I have to wait for the test results of a genetic test my sister had done a couple months back.

Let me know if you have any questions! I was in your shoes not that long ago!

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Thank you and congratulations! I have not heard back since mid week last week after I signed the authorization. Does Mayo call before sending the blood kit out to you? I know they are helping many!

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@keggebraaten

@jdcowle5 – Thank you for considering living donation! As for the kit, there should be instructions inside the kit. Take it to your local lab, they will draw the blood and should ship it back to Mayo Clinic for you. If there are further questions while you are there (or before you go) you can contact our living donor phone line at 866-227-1569. As for your return to work, every patient is a little bit different. If you have a sedentary desk job, you can likely return sooner than someone who has a physical labor job. The average is 3-6 weeks, depending upon your type of work, your recovery, and any issues you may have after surgery. Your nurse coordinator can give you a better estimate once they see you in evaluation. If you have any further questions, let us know. And thanks again for considering donation! – Kristin

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Thank you very much! Excited for the journey and hopeful it continues!

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I would love get an update about you experiences, and to welcome anyone who is considering living organ donation to share their experience and/or their questions.

@jdcowle5, I am thinking about you and I commend you for your willingness to consider being an organ donor. I am aware that the evaluation is very thorough, and can be lengthy and can result in either being eligible or not. Regardless of the result, you are a hero for what you are doing. Were you able to proceed to evaluation? I am interested in any update that you have to share.

@ek101085, I am interested in hearing from you. Have you received any update regarding your organ donation to your sister? If you are not a match for her, has there been any mention of being part of a donation chain?

@elevinton, How are you? Were you able to proceed with your surgery?

@marvinjsturing, I am thinking about you as you continue your journey toward your own organ transplant. I salute you for your positive attitude and I always welcome your input. I hope that your path is remaining smooth.

@mauraacro, @jolinda, @cmael – Do you want to share any updates? Do you have any suggestions to offer to anyone who is considering living donation?
I also want to invite @rebekahinvt .

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@rosemarya

I would love get an update about you experiences, and to welcome anyone who is considering living organ donation to share their experience and/or their questions.

@jdcowle5, I am thinking about you and I commend you for your willingness to consider being an organ donor. I am aware that the evaluation is very thorough, and can be lengthy and can result in either being eligible or not. Regardless of the result, you are a hero for what you are doing. Were you able to proceed to evaluation? I am interested in any update that you have to share.

@ek101085, I am interested in hearing from you. Have you received any update regarding your organ donation to your sister? If you are not a match for her, has there been any mention of being part of a donation chain?

@elevinton, How are you? Were you able to proceed with your surgery?

@marvinjsturing, I am thinking about you as you continue your journey toward your own organ transplant. I salute you for your positive attitude and I always welcome your input. I hope that your path is remaining smooth.

@mauraacro, @jolinda, @cmael – Do you want to share any updates? Do you have any suggestions to offer to anyone who is considering living donation?
I also want to invite @rebekahinvt .

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Hello!

I was fully approved as an organ donor in July.
Because of the rare disease and all the options and preconditioming that may or may not need to be completed before an actual transplant can take place, we are still awaiting to hear when a surgery may be scheduled.
My sisters case is complicated and the waiting game is a tough one, especially when she continues to get worse.
Hopefully 2020 will be our year.

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@rosemarya

I would love get an update about you experiences, and to welcome anyone who is considering living organ donation to share their experience and/or their questions.

@jdcowle5, I am thinking about you and I commend you for your willingness to consider being an organ donor. I am aware that the evaluation is very thorough, and can be lengthy and can result in either being eligible or not. Regardless of the result, you are a hero for what you are doing. Were you able to proceed to evaluation? I am interested in any update that you have to share.

@ek101085, I am interested in hearing from you. Have you received any update regarding your organ donation to your sister? If you are not a match for her, has there been any mention of being part of a donation chain?

@elevinton, How are you? Were you able to proceed with your surgery?

@marvinjsturing, I am thinking about you as you continue your journey toward your own organ transplant. I salute you for your positive attitude and I always welcome your input. I hope that your path is remaining smooth.

@mauraacro, @jolinda, @cmael – Do you want to share any updates? Do you have any suggestions to offer to anyone who is considering living donation?
I also want to invite @rebekahinvt .

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I am coming up on my 2 year anniversary of surgery.
Mayo sent the box of lab work on Monday to complete and ship back. My blood draw was in Portland, OR on Thurs morning, I Fed X'd it to Mayo and had the results in my inbox Friday at noon. I am equally impressed by the speed of things Mayo does as I am by the fact that I had an organ removed with very little effect on my body and no negative effect on my health.
I checked in with the recipient and all is well from her side too!

To anyone considering organ donation- This was one of the best choices I have ever made and if possible, I would do it again.
No matter how far you make it in the evaluation process, you will have more information about living donation than most people and can use that information to encourage others to consider donation.

REPLY
@rosemarya

I would love get an update about you experiences, and to welcome anyone who is considering living organ donation to share their experience and/or their questions.

@jdcowle5, I am thinking about you and I commend you for your willingness to consider being an organ donor. I am aware that the evaluation is very thorough, and can be lengthy and can result in either being eligible or not. Regardless of the result, you are a hero for what you are doing. Were you able to proceed to evaluation? I am interested in any update that you have to share.

@ek101085, I am interested in hearing from you. Have you received any update regarding your organ donation to your sister? If you are not a match for her, has there been any mention of being part of a donation chain?

@elevinton, How are you? Were you able to proceed with your surgery?

@marvinjsturing, I am thinking about you as you continue your journey toward your own organ transplant. I salute you for your positive attitude and I always welcome your input. I hope that your path is remaining smooth.

@mauraacro, @jolinda, @cmael – Do you want to share any updates? Do you have any suggestions to offer to anyone who is considering living donation?
I also want to invite @rebekahinvt .

Jump to this post

A year ago last August, I was tested and approved for a kidney transplant at Mayo. Because of my history of pancreatic cancer, I was placed on the inactive list. I made it known that I was in need of a kidney. Two people offered to be living donors. The first one was disqualified because of medication she was on. The second one, my sister, filled out the online questionnaire and was scheduled for testing in late June. In early June, I went to Rochester for a PET scan. At that time, I met the final requirement of being cancer free for 5 years and was placed on the active list for a transplant. A few days later, my sister was diagnosed with Mantel Cell Lymphoma, a rare kind on non-hodgkin's leukemia. (She has now completed her chemo and is currently scheduled for a stem cell transplant in January. This cancer is not curable, but the transplant is being done to help extend the time she is in remission.) At this time, I am not aware of anyone working on becoming a living donor. I am scheduled to go to Nebraska Medicine in Omaha in January to be tested to see if I can be placed on their transplant list. The wait list at Mayo is currently 3 – 7 years and the wait list at Nebraska Medicine is currently 1 – 3 years.

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@marvinjsturing

A year ago last August, I was tested and approved for a kidney transplant at Mayo. Because of my history of pancreatic cancer, I was placed on the inactive list. I made it known that I was in need of a kidney. Two people offered to be living donors. The first one was disqualified because of medication she was on. The second one, my sister, filled out the online questionnaire and was scheduled for testing in late June. In early June, I went to Rochester for a PET scan. At that time, I met the final requirement of being cancer free for 5 years and was placed on the active list for a transplant. A few days later, my sister was diagnosed with Mantel Cell Lymphoma, a rare kind on non-hodgkin's leukemia. (She has now completed her chemo and is currently scheduled for a stem cell transplant in January. This cancer is not curable, but the transplant is being done to help extend the time she is in remission.) At this time, I am not aware of anyone working on becoming a living donor. I am scheduled to go to Nebraska Medicine in Omaha in January to be tested to see if I can be placed on their transplant list. The wait list at Mayo is currently 3 – 7 years and the wait list at Nebraska Medicine is currently 1 – 3 years.

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@marvinjsturing Keeping my fingers crossed for you, and your sister!
Ginger

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@marvinjsturing

A year ago last August, I was tested and approved for a kidney transplant at Mayo. Because of my history of pancreatic cancer, I was placed on the inactive list. I made it known that I was in need of a kidney. Two people offered to be living donors. The first one was disqualified because of medication she was on. The second one, my sister, filled out the online questionnaire and was scheduled for testing in late June. In early June, I went to Rochester for a PET scan. At that time, I met the final requirement of being cancer free for 5 years and was placed on the active list for a transplant. A few days later, my sister was diagnosed with Mantel Cell Lymphoma, a rare kind on non-hodgkin's leukemia. (She has now completed her chemo and is currently scheduled for a stem cell transplant in January. This cancer is not curable, but the transplant is being done to help extend the time she is in remission.) At this time, I am not aware of anyone working on becoming a living donor. I am scheduled to go to Nebraska Medicine in Omaha in January to be tested to see if I can be placed on their transplant list. The wait list at Mayo is currently 3 – 7 years and the wait list at Nebraska Medicine is currently 1 – 3 years.

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@marvinjsturing I will have you in my thoughts and prayers. I know the waitlist for kidneys is very long. My niece's husband was on dialysis for five years and finally had a transplant in August. He is doing fabulously now.

You don't mention where you live but I hope you do keep looking at transplant centers to find out where the shortest waits are, as long as they are at excellent transplant centers. When I was first a candidate for a liver transplant at Mass General in Boston they told me right up front that other regions would probably be able to transplant me sooner and mentioned a couple of good ones. I did some research too and was about to list at my second choice, Mayo, because they felt they could transplant me sooner than MGH could. Of course having the transplant close to home made MGH my first choice — I live in southern NH and MGH is also very highly rated. I was able to get a transplant there at the same MELD that Mayo thought they could transplant me at.
JK

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