Kidney transplant - The Journey from the Donor's Side

Posted by mauraacro @mauraacro, Jan 2, 2018

I’m headed to Rochester on the 10th for surgery on the 12th. I’m excited and nervous! I didn’t know the recipient but have gotten to “meet” her and some of her daughters through phone calls and emails.
I’ve had labs done at my doctor’s office and went to Mayo a few weeks ago for a million more tests. My case was presented to the donor board a few days before Christmas and I was approved and notified the same day. It seems like everything took so long and now is going so fast.
I’m interested in hearing from donors but haven’t had a lot of luck. It seems like the recipients are the ones who post the most, which gives me some info and reassurance but it would be nice to hear from the other side too.

@mauraacro

I've completed my 1st day of my 6 month check up after donation.
I came back to Mayo Rochester for it, although if it were a hardship for me, I could have done the tests at home. I don't know if I've already said this but it was easier for the recipient to fly me here & pay for my hotel than to figure out how to bill her insurance and have me test at home. That makes me sad because she's a highly intelligent, organized woman and the insurance companies still make it next to impossible for her to figure out how to use it most logically. It would have been cheaper for them too. I'm glad to be here though, I have complete faith in the care I receive at Mayo.

Day 1 for my check ups involved an 18 hour blood pressure cuff, 24 hour urine collection, lab work, renal cleaeance, meeting with a nurse & a social worker. Tomorrow will be dropping off the cuff & big orange jug, meeting with a nurse (not sure why) and getting clearance from the doctor.

I'll be sad to leave, knowing I probably (& hopefully) won't be back but I can't say enough good things about my experience both with kidney donation and at Mayo.

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@mauraacro Wow this one didn`t make it to my email. It is a good thing I always double check to see if I missed anything. I'm so happy to hear such good news as well as what you had/ have to do for this.
I have to pay full price for my 5 day motel stay because I'm an altruistic donor. Ugh but I've committed to this & I'm determined to see it through even though this is a bit of a hardship.
Love my rose colored lenses – we (middle child & grands) will bake in the sun, frolic in the sea & take in a beach sunset or few.

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@coquifoife

My daughter is my donor. I’ll see if she will register and communicate with you. My transplant was 20 years ago.

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@coquifoife 20 years wow. That is music to my soul. As an altruistic donor it is a beautiful thought that my kidney may enhance the quality of someone & their loved ones for decades. You sharing this gets me excited & hopeful. To tell the truth not everyone in my circle support my decision to literally give my body parts to some stranger & I certainly prefer to know my kidney recipient.

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@beckyjohnson I was eligible to stay at the gift of life house for any transplant related trips and I think they have similar places near all of the Mayo locations. A lot of hotels offer mayo discounts too.
I can't remember the name of the organization that helps cover costs for donors but I'll see if I can find it. In my case, it was based on the recipients income/insurance but they must have something for altruistic donors.

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@mauraacro

@beckyjohnson I was eligible to stay at the gift of life house for any transplant related trips and I think they have similar places near all of the Mayo locations. A lot of hotels offer mayo discounts too.
I can't remember the name of the organization that helps cover costs for donors but I'll see if I can find it. In my case, it was based on the recipients income/insurance but they must have something for altruistic donors.

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@mauraacro Thank you for that. All these appointments came up so suddenly I haven't had a chance to travel the 5 hour round trip to do the tour much less initiate eligability & reservation processes. At 1-2 testing I would have just driven back & forth but 5 days of testing that isn't practical

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Hello all. I'm catching up on this thread as I've just been accepted as a donor (directed) and I'm trying to connect with folks who have gone through the donation process. Phoenix AZ Mayo specifically.

The Mayo staff have all been excellent during this process, however I found very little opportunity to talk with other donors (or recipients) who have already undergone their procedures. And I'd like very much to do that.

So, I'll be catching up on a lot of threads here but I'd appreciate any help from this thread re: pointing me towards someone I could talk to about their experiences. I think some direct communication would help me immensely. Thanks in advance.

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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Emotion 26: Amazement. I have 20 appointments in 4 days

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@cleverusername Congratulations! Feel free to PM me and I'll give you my phone # & email. I donated in Rochester but have heard they are similar

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@beckyjohnson I don't think this is the one I was thinking of but I'm 99% sure Mayo works with them. Mayo also has financial advisors that can help you figure things out. Maybe you can just call the Mayo direct line and ask for a donor related financial person to talk to. I would not have been able to pay for everything out of pocket and I'm sure most people are in the same boat.
https://www.livingdonorassistance.org/Home/default.aspx

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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@beckyjohnson bring snacks (protein bars or something with protein is great), water bottle, a book and a phone charger. If you get done with an appointment early, you can check in at your next one and see if there's a chance to get in earlier, it doesn't always work but they seem good with estimating. Also, if you're running late because of their schedule, ask them to call the next appointment to let them know.

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@cleverusername

Hello all. I'm catching up on this thread as I've just been accepted as a donor (directed) and I'm trying to connect with folks who have gone through the donation process. Phoenix AZ Mayo specifically.

The Mayo staff have all been excellent during this process, however I found very little opportunity to talk with other donors (or recipients) who have already undergone their procedures. And I'd like very much to do that.

So, I'll be catching up on a lot of threads here but I'd appreciate any help from this thread re: pointing me towards someone I could talk to about their experiences. I think some direct communication would help me immensely. Thanks in advance.

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@cleverusername Thank you for joining us in our donor journeys. @mauraacro is a directed donor who has just made the 6 mnth post donation checkup. I'm an altruistic donor who would dearly love to meet my recipient. I'm nearing a month into the actual process & have advanced to 5 days of testing. Next week I will have 20 tests in 4 days. It is very exciting to know that 50+ lives may be positively impacted because of one altruistic kidney donation and directed kidney donations that become part of a paired chain due to directed recipient incompatibility.
Even though each transplant experience is unique to the parties involved there are tips, trials & experiences that we share to help smooth the journey. It is an enormous decision to give up part of your body as a living donor. For lack of a more accurate word congrats to you on your life giving decision.

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@mauraacro Thank you for the link. I checked it out & even though I fall into the category to be qualified I'm to late for next week's lodging. The application must be processed no later than 10 days before the trip. I didn't even get my itinerary in time for that deadline. One of my upcoming 20 appointments (which I uncategorized all as tests) is with a financial advisor so hopefully we can get the paperwork done in time for the surgery date.

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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@mauraacro I'm truly so glad you started this discussion & are leading the way in a sense. Again thank you for those tips – especially "if you're running late because of their schedule, ask them to call the next appointment to let them know".

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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@mauraacro we've had to do that twice this trip!

Liked by cehunt57

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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@beckyjohnson when my husband was listed last year we had 23 in 4. Thankfully it was the week of the 4th, so we head a rest day in the middle. It's exhausting aft the time, but great to have it all done in one trip. The only tips I'll add is bring a jacket and wear walking shoes. Some of the offices can be cold and you'll put on lots of steps.
Blessings,
JoDee

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@cleverusername

Hello all. I'm catching up on this thread as I've just been accepted as a donor (directed) and I'm trying to connect with folks who have gone through the donation process. Phoenix AZ Mayo specifically.

The Mayo staff have all been excellent during this process, however I found very little opportunity to talk with other donors (or recipients) who have already undergone their procedures. And I'd like very much to do that.

So, I'll be catching up on a lot of threads here but I'd appreciate any help from this thread re: pointing me towards someone I could talk to about their experiences. I think some direct communication would help me immensely. Thanks in advance.

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@cleverusername, I want to welcome you to Mayo Clinic Connect. I am happy that you have found this discussion group. You are speaking to our members who are donor "experts".
I am a liver/kidney recipient (2009) and speaking as a recipient, I thank you for the decision that you have made about testing to be a potential donor. I assure you that organ donation works! I am behind on my replies right now because I have been unplugged, and enjoying some great hiking in the Great Smoky Mountains in NC and TN – Thanks to my wonderful organ donor. My donor was a deceased anonymous donor, but I give thanks and honor him daily.

Take your time reading thru the many discussions on Connect. I would like to suggest that you might read thru any of the discussions in Transplant, and there are some in the Kidney and Bladder groups. Let me know if I can help you find anything.

Here is the link to the Connect Pages where there are materials for transplant recipients as well as living donors. No matter where you are in your transplant journey, I believe you will find some useful information – https://connect.mayoclinic.org/page/transplant/

I look forward to learning about the living donor process right along with you.
Rosemary

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