Steps a potential living donor goes through? Need help explaining....

Posted by keepingthefaith @keepingthefaith, Jul 23, 2022

Hello everyone. I’m so glad I found this amazing community forum! I’m helping a family member get the word out about her need for a living kidney donor. In our campaign, we want to make sure we present the most accurate information – especially for the public pages like Facebook , our website, etc. I can't find a specific step-by-step on Mayo's website about the application and evaluation steps. I feel like it's important to explain to an interested person what happens, but I’ve only found generalities on Mayo’s site. (If anyone knows of a step-by-step link, please let me know.)

Based on research and limited experience, we’ve put together a list of steps. I’d like to request here on this awesome forum if some qualified experts and also people who have been through the entire process could please let me know if anything needs to be corrected. We’d be very grateful for input and feedback!

If someone wants to apply:

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1. Appointment Request -- fill out online the Mayo Clinic Living-Donor Appointment Request to schedule an appointment to discuss the donation process by phone with the Mayo Clinic Transplant Center in Jacksonville, Florida. There's an 8 minute living donor informational video to watch before submitting the completed request. Or if you'd rather call, contact them at (904) 956-3302 or (904) 956-3309 Monday – Friday 8am to 5pm Eastern Time. After submitting your appointment request they will email you a booklet packed with information about living kidney donation and will stay in touch with you.

2. Health History Questionnaire -- Mayo Clinic will evaluate your medical history to determine if you meet the basic qualifications of donation. Before you begin, please obtain your current height and weight and be sure to fill out the form only when have adequate time to concentrate on each question. It's also recommended that you use a laptop or desktop computer instead of a mobile device. (If an answer disqualifies you, there will be a notice on the screen and it won’t allow you to proceed with the questions.)

If nothing in your Health History Questionnaire disqualifies you:
3. Phone interview -- you’ll be contacted by someone on the transplant team within a few weeks. (If you haven't heard from them after about 3 weeks, reach out to your Mayo Clinic contact person to inquire of the status of your application.)

If you’re eligible to proceed:
4. Bloodwork at your local lab.

If blood tests indicate you’re eligible to proceed:
5. Evaluations by video virtual visits and office visits, and medical testing. (If you don't live near Jacksonville, Florida: discuss with your Living Donor Coordinator what location options in your area may be available to you for the evaluations and surgery.) Evaluation involves a few days of extensive outpatient testing, which covers head-to-toe health. Also meetings with the transplant team -- a kidney doctor, a surgeon, a living donor advocate, a nurse, a social worker, an RN coordinator, and a finance specialist. Each of these individuals will help paint the bigger picture and answer you and your family's questions of what donating a kidney entails. Your evaluation is separate from Lucy's and is kept confidential, and you may stop the evaluation at any time for any reason.

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Thank you for any help anyone here on the forum could offer. Comments/corrections/constructive criticism/questions are anticipated.

: )

Interested in more discussions like this? Go to the Transplants Support Group.

Ginger, Volunteer Mentor | @gingerw | Jul 23, 2022

@keepingthefaith Welcome to Mayo Clinic Connect! You've done a lot of homework so far to help your family member. Social media, faith communities, friends, family, even a sign on your car or wearing a T-shirt with what your family is looking for, have all been successful, from speaking to fellow kidney disease warriors.

One thing I would think about as you get your campaign underway: Careful to not overwhelm someone who may be interested in being a living donor. Generalities are good at the beginning, more info can be added in as the steps proceed.

I'm sure you have seen the Mayo Clinic living donor information: [kidney specific] https://www.mayoclinic.org/tests-procedures/living-donor-kidney-transplant/pyc-20384838 and [living donor in general] https://www.mayoclinic.org/tests-procedures/living-donor-transplant/about/pac-20384787

As you can imagine, it is a major surgery, and a major undertaking. One thing to slip in for information, is the fact if someone donates a spare kidney, and later needs a transplant themselves, they go to the top of the list for transplant.

Is your family member on dialysis at the moment, or doing a preemptive transplant? My sister offered to be evaluated for me for a kidney transplant a couple of years ago, but we found out that due to being an active blood cancer patient, I am not eligible. Those who step up are heroes, in my book!
Ginger

Colleen Young, Connect Director | @colleenyoung | Jul 23, 2022

@keepingthefaith, I'd like to add my welcome. You asked for step-by-step explanations about becoming a living donor and for people who have been a living donor to validate the information that you've collected as you help your family member find a living donor. Well, fasten your seatbelt. I've got links to resources and related discussions, as well as connections for you.

In these discussions members share creative ways to find a donor:
- Ways to Advertise: How Did you Find a Kidney Donor? https://connect.mayoclinic.org/discussion/ways-to-advertise/
– Finding a Living Donor https://connect.mayoclinic.org/page/transplant/newsfeed-post/finding-a-living-donor/
– Waiting for an altruistic donor https://connect.mayoclinic.org/discussion/waiting-for-an-altruistic-donor/

The Recipient Toolkit https://connect.mayoclinic.org/blog/transplant/tab/resource-35/ from the Transplant expert blog is an excellent resource that can provide you with some additional information.

However, I think you are most looking for this type of step-by-step guidance from the Transplant blog
- Living Donor Toolkit https://connect.mayoclinic.org/blog/transplant/tab/resource-36/

As must see are these discussions where living donors share their journeys. In these discussions you'll meet donor heros like @danhoe @mauraacro @tasher3433 @sameeh123 @savvysarahjane @kristinkay and others. They provide a first hand viewpoint from deciding to be a donor to actually doing it.
– Kidney transplant from the donor's side https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/
- Donating my kidney: Any tips? What do you wish you'd known? https://connect.mayoclinic.org/discussion/wed-may-20-20-kidney-donation/
- Donating a kidney, flying to Mayo for surgery, any packing tips? https://connect.mayoclinic.org/discussion/donating-a-kidney-flying-to-mayo-for-surgery-any-packing-tips/
- Decided to be a Living Donor: How to gain support from spouse https://connect.mayoclinic.org/discussion/how-to-gain-support-from-spouse/

There are more links to share, but I think that's a good start to get the conversation going. @keepingthefaith, I'll appreciate it if you share back any gaps in information you discover.

Colleen Young, Connect Director | @colleenyoung | Jul 23, 2022

@keepingthefaith, here are some more related discussions
-What is the Living Donor Process Like? https://connect.mayoclinic.org/discussion/living-donor-process/
- Kidney transplant - process for being a living donor https://connect.mayoclinic.org/discussion/kidney-transplant/
- How did you find a living donor? What can I expect? https://connect.mayoclinic.org/discussion/in-need-of-advice/
- Kidney transplant: Thinking of becoming a donor https://connect.mayoclinic.org/discussion/kidney-transplant-3/

Cheryl, Volunteer Mentor | @cehunt57 | Jul 24, 2022

@gingerw and @colleenyoung thank you for all the helpful links and information. I have been looking for a living kidney donor also since 2016. I would add some information about the paired exchange program for people who have willing donors but encounter incompatible blood types. People who are working with the Mayo transplant system should know that there is an added benefit to be had in that the three campuses are affiliated (Rochester, MN ; Jacksonville, FL and Scottsdale, AZ).

Colleen Young, Connect Director | @colleenyoung | Jul 25, 2022

In reply to @cehunt57 "@gingerw and @colleenyoung thank you for all the helpful links and information. I have been looking..." + (show)

Great suggestion @cehunt57. I hope this will also encourage more discussion about paired exchange experiences.

From the Transplant blog:
- Your Living Kidney Donor Isn't a Match - Now What? https://connect.mayoclinic.org/blog/transplant/newsfeed-post/your-living-kidney-donor-isnt-a-match-now-what/
- Kidney Paired Donation and the Mayo Clinic Experience - An Update https://connect.mayoclinic.org/blog/transplant/newsfeed-post/kidney-paired-donation-and-the-mayo-clinic-experience-an-update/
- Donation Chains Save Lives https://connect.mayoclinic.org/blog/transplant/newsfeed-post/donation-chains-save-lives/
- Nondirect Donor Q&A with Kay Kosberg, R.N., C.C.T.C. https://connect.mayoclinic.org/blog/transplant/newsfeed-post/nondirect-donor-qa-with-kay-kosberg-r-n-c-c-t-c/

And first-hand experiences in the discussions:
- Anyone have any experience with Paired Exchange vouchers? https://connect.mayoclinic.org/discussion/paired-exchange-voucher/
- It's getting real... found a living donor https://connect.mayoclinic.org/discussion/its-getting-real-found-a-living-donor/

@keggebraaten @danhoe and @2gallonhabit may have more to add to this discussion too, especially regarding paired donation exchange.

Kristin Eggebraaten | @keggebraaten | Jul 26, 2022

In reply to @colleenyoung "Great suggestion @cehunt57. I hope this will also encourage more discussion about paired exchange experiences. From..." + (show)

If anyone would like a resource that isn't a single medical center, Mayo also partners with the National Kidney Foundation who partners with many hospitals in the nation. They have some great information on their website here: https://www.kidney.org/transplantation.

In addition, our doctors and doctors from other centers, also give free webinars through the National Kidney Foundation. You can find information about upcoming events on this page: https://www.kidney.org/offices/nkf-serving-minnesota. On the right side of the page you will find an Upcoming Events section. The webinars are often Mayo staff and always free of charge.
I hope this information is helpful. Happy to answer any questions!

keepingthefaith | @keepingthefaith | Aug 1, 2022

Thank you all so much for your replies, wowww! Fantastic resources.

That is a great caution about not overwhelming an interested person with too many details. We hope to find a balance between providing too much information and not enough information. We were thinking we wanted to provide enough info about the process in order to weed out curiosity-seekers and anyone who'd be attracted to applying just to get a free thorough medical workup with the intent of backing out at the end ... both of these types of inquirers would waste valuable time and money. Mayo told us that when a person submits the appointment request, they are actually applying. It's not just an appointment to talk and ask questions about being a living donor, it's the first step in the application process. So if I'm understanding correctly, that person needs to have done their research by then and is on board with starting and proceeding.

Anyway, I've been exploring the information you guys shared. It's so very much appreciated!

P.S. -- in appreciation, I've created a post to share some helpful tips we've personally learned as we're discovering how to get the word out about the need for a donor. Maybe these tips will help others here.

I'm not eligible to post links here yet since I'm new to this message board, but you can find it here in the transplant group under the title "how to get the word out: detailed ideas, tips, resources! + helpers"