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.

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

@cleverusername

Hello all,

I came back for a little update.

I found this thread a few months ago while looking to speak with other folks going through a donation.

Since then I connected with @mauraacro (and I have read all of @triciaodonnell's posts) and through some lucky chance encounters, I met up with some other donors & recipients in my town. Very lucky re: how some these connections came about, very much by chance - so I'm happy to have had these chances.

I also was able to tell my family about my donation decision, in person. That was pretty interesting. It went well, they're supportive, but it was certainly difficult to explain. Fortunately I took a lot of literature with me, which helped. My workplace is also supportive, and I have a fantastic partner as well that is assisting and also very supportive. I'm very lucky in this respect.

Everything is lining up, which, as only a couple of months have gone by, is pretty exceptional. There's a lot more I could write here, but perhaps I can save that for a future post. In general, I've been very amazed at the responses I've gotten from the people I have told about this - and I'm certainly more aware of how many people out there are in need of a kidney.

So: now it's all just logistics: My last contact with Mayo was re: moving forward with the process, picking a date, etc. My recipient doesn't know yet, and I'm letting the Mayo team handle this, which is OK with me. So for now I'm in kind of a holding pattern, waiting to see what happens and how it all moves forward. It's an interesting time, to say the least.

If anyone out there is in the same situation and wants to connect, let me know. I plan on documenting my experience here much like @triciaodonnell and @mauraacro have done. Reading their experiences has helped me greatly with my own decision making and meditation on this decision, so perhaps I can help do that for someone else.

-cleverusername

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@cleverusername
You are AMAZING!!! I received a living donor kidney and the transformation for me was immediate. I went from getting sicker everyday to getting better everyday. You can't imagine what a difference your gift is making in someone's life. God bless you for giving someone a second chance. I adore my donor, she is my "kidney sister", today we spent the day with a group of patients who are waiting for kidneys and shared our journeys, she of course is the hero of the story!!! Not only are you helping your donor but EVERY single person on the waiting list moves up one notch because of YOU!!! INCREDIBLE!

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@cleverusername

Hello all,

I came back for a little update.

I found this thread a few months ago while looking to speak with other folks going through a donation.

Since then I connected with @mauraacro (and I have read all of @triciaodonnell's posts) and through some lucky chance encounters, I met up with some other donors & recipients in my town. Very lucky re: how some these connections came about, very much by chance - so I'm happy to have had these chances.

I also was able to tell my family about my donation decision, in person. That was pretty interesting. It went well, they're supportive, but it was certainly difficult to explain. Fortunately I took a lot of literature with me, which helped. My workplace is also supportive, and I have a fantastic partner as well that is assisting and also very supportive. I'm very lucky in this respect.

Everything is lining up, which, as only a couple of months have gone by, is pretty exceptional. There's a lot more I could write here, but perhaps I can save that for a future post. In general, I've been very amazed at the responses I've gotten from the people I have told about this - and I'm certainly more aware of how many people out there are in need of a kidney.

So: now it's all just logistics: My last contact with Mayo was re: moving forward with the process, picking a date, etc. My recipient doesn't know yet, and I'm letting the Mayo team handle this, which is OK with me. So for now I'm in kind of a holding pattern, waiting to see what happens and how it all moves forward. It's an interesting time, to say the least.

If anyone out there is in the same situation and wants to connect, let me know. I plan on documenting my experience here much like @triciaodonnell and @mauraacro have done. Reading their experiences has helped me greatly with my own decision making and meditation on this decision, so perhaps I can help do that for someone else.

-cleverusername

Jump to this post

@cleverusername
Thank you for sharing this update. I can't imagine a more perfect way to start the Month of October!
As a recipient, (deceased organ donor), I honor you for your decision.

REPLY

Hello all - I'm back.

Today is the first day I've been physically alone in weeks, so I am finally sitting down for a follow-up post to my donation on Nov 14th, 2018 at Mayo Scottsdale.

I'd like to leave my name and experiences here for anybody who may be donating - or just even considering. The most helpful thing I did during my process was talk to as many donors & recipients as I could find. So: I'm adding my name to the record here for anyone looking to do the same.

People reading this in the future: please do do not hesitate to contact me if you think there's a question I can answer that might help you out, somehow.

Picking up where I left off:

I met my partner in Phoenix several days before my donation so we could relax before things got intense. I found a Scottsdale long-term Airbnb that was ~10mins from Mayo, so we got checked in and my family arrived on the 13th. A couple of easy days playing tourist was fantastic 🙂

And then, on Nov 14th 2018 somewhere around 7am, I donated my left kidney to an old college friend.

The experience is not something I can fully describe here. There are a lot of details, lots of very specific memories I have of this time, so if anyone has specific questions (pain? pre-visit prep? nervousness? travel? costs? housing? Mayo details? etc) please reach out. It is just impossible for me to detail everything properly - but I'm happy to dig into specifics for anybody who has a question.

I remain amazed at the number of variables that lined up for this donation: my life, my friend's life, the support and work of both our families and partners, our employers and friends, support from dozens of Mayo's professionals and experts, all the preparations and plans that took place beforehand, the work of all the potential donors who came before me ... just the sheer number of factors and people involved. I feel like there are several million ways this could have panned out - and we both came out on the best side of the best possible combination of all of these untold variables. That's quite something.

I remember one very specific moment, right out of surgery (which would have been right when my recipient was headed in) coming off of the anesthesia - my brain finally wandered back into the world and I finally remembered who I was, where I was, what just happened. Finally knowing that everything after *that specific point in time* was all autopilot - that there were no more unknowns. That the rest was all out of my hands. This moment is now one of my top ten life memories - just lying in a quiet bed somewhere, feeling the world coming back into focus, knowing my part was now a final, complete, and finished thing.

One night in Mayo to recuperate was enough, and then I went 'home' to my temporary spot in Scottsdale for a week of downtime. Lots of books and netflix. My pain remained about a ~2 or 3 of possible 10, which was fine. I owe an indescribable debt to my partner and my family for their help during this time. The support they gave me was amazing, and humbling. My partner in particular shouldered a huge, difficult amount of this experience - she's absolutely the most stellar person I know. I overflow with gratitude for having her in my life.

Mayo warned me about the up-and-down nature of the recovery and damn, were they right: One day I'd feel great, the next day I'd feel like a truck hit me: fatigue, muscle soreness, lethargy. Those up and downs continue to a very lesser degree, but that first week was something.

My recipient did great. He went into this pretty rough, though, so he had a harder experience coming out. His first couple of days were rocky. His story is his own, but from my side it was good to see him finally clear some final hurdles and feel his new 'hardware' kick in and start to enjoy all the hard work we both put in. It was pretty astonishing to hear the post-transplant numbers that they shared with me. Apparently the kidney I gave him is a real go-getter 🙂 It is going to serve him super well.

Today is Nov 28th, 2018, exactly two weeks after our transplant date, and we're both doing super well. I'm finally home, in Oregon, and taking lots of time off of work. My recipient is back in AZ doing the same (he lives there) - neither one of us has obligations for weeks, so we're just regaining our strength and hanging out in our respective towns. It is a good time in both of our lives.

I want to send a huge thank you to everybody here that I spoke with over the last year, and to those who wished me well and shared their experiences with me.

I would love to pay that goodwill forward, and I hope this post helps me do exactly that for someone who may read this and want to know more.

Thank you to all,

- cleverusername
- PDX, 11am, 11/28/2018

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@cleverusername

Hello all - I'm back.

Today is the first day I've been physically alone in weeks, so I am finally sitting down for a follow-up post to my donation on Nov 14th, 2018 at Mayo Scottsdale.

I'd like to leave my name and experiences here for anybody who may be donating - or just even considering. The most helpful thing I did during my process was talk to as many donors & recipients as I could find. So: I'm adding my name to the record here for anyone looking to do the same.

People reading this in the future: please do do not hesitate to contact me if you think there's a question I can answer that might help you out, somehow.

Picking up where I left off:

I met my partner in Phoenix several days before my donation so we could relax before things got intense. I found a Scottsdale long-term Airbnb that was ~10mins from Mayo, so we got checked in and my family arrived on the 13th. A couple of easy days playing tourist was fantastic 🙂

And then, on Nov 14th 2018 somewhere around 7am, I donated my left kidney to an old college friend.

The experience is not something I can fully describe here. There are a lot of details, lots of very specific memories I have of this time, so if anyone has specific questions (pain? pre-visit prep? nervousness? travel? costs? housing? Mayo details? etc) please reach out. It is just impossible for me to detail everything properly - but I'm happy to dig into specifics for anybody who has a question.

I remain amazed at the number of variables that lined up for this donation: my life, my friend's life, the support and work of both our families and partners, our employers and friends, support from dozens of Mayo's professionals and experts, all the preparations and plans that took place beforehand, the work of all the potential donors who came before me ... just the sheer number of factors and people involved. I feel like there are several million ways this could have panned out - and we both came out on the best side of the best possible combination of all of these untold variables. That's quite something.

I remember one very specific moment, right out of surgery (which would have been right when my recipient was headed in) coming off of the anesthesia - my brain finally wandered back into the world and I finally remembered who I was, where I was, what just happened. Finally knowing that everything after *that specific point in time* was all autopilot - that there were no more unknowns. That the rest was all out of my hands. This moment is now one of my top ten life memories - just lying in a quiet bed somewhere, feeling the world coming back into focus, knowing my part was now a final, complete, and finished thing.

One night in Mayo to recuperate was enough, and then I went 'home' to my temporary spot in Scottsdale for a week of downtime. Lots of books and netflix. My pain remained about a ~2 or 3 of possible 10, which was fine. I owe an indescribable debt to my partner and my family for their help during this time. The support they gave me was amazing, and humbling. My partner in particular shouldered a huge, difficult amount of this experience - she's absolutely the most stellar person I know. I overflow with gratitude for having her in my life.

Mayo warned me about the up-and-down nature of the recovery and damn, were they right: One day I'd feel great, the next day I'd feel like a truck hit me: fatigue, muscle soreness, lethargy. Those up and downs continue to a very lesser degree, but that first week was something.

My recipient did great. He went into this pretty rough, though, so he had a harder experience coming out. His first couple of days were rocky. His story is his own, but from my side it was good to see him finally clear some final hurdles and feel his new 'hardware' kick in and start to enjoy all the hard work we both put in. It was pretty astonishing to hear the post-transplant numbers that they shared with me. Apparently the kidney I gave him is a real go-getter 🙂 It is going to serve him super well.

Today is Nov 28th, 2018, exactly two weeks after our transplant date, and we're both doing super well. I'm finally home, in Oregon, and taking lots of time off of work. My recipient is back in AZ doing the same (he lives there) - neither one of us has obligations for weeks, so we're just regaining our strength and hanging out in our respective towns. It is a good time in both of our lives.

I want to send a huge thank you to everybody here that I spoke with over the last year, and to those who wished me well and shared their experiences with me.

I would love to pay that goodwill forward, and I hope this post helps me do exactly that for someone who may read this and want to know more.

Thank you to all,

- cleverusername
- PDX, 11am, 11/28/2018

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cleverusername - Thank you for coming back to Connect and sharing your amazing story.

Your remembrance of your special moment right after surgery is beautiful and so meaningful to me. "... that there were no more unknowns...This moment is now one of my top ten life memories – just lying in a quiet bed somewhere, feeling the world coming back into focus, knowing my part was now a final, complete, and finished thing."

Are you on facebook? Take a look at - https://www.facebook.com/MayoClinicTransplant
21 hrs ago - Living Kidney Donatioin Surgery-Play by Play -

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@cleverusername

Hello all - I'm back.

Today is the first day I've been physically alone in weeks, so I am finally sitting down for a follow-up post to my donation on Nov 14th, 2018 at Mayo Scottsdale.

I'd like to leave my name and experiences here for anybody who may be donating - or just even considering. The most helpful thing I did during my process was talk to as many donors & recipients as I could find. So: I'm adding my name to the record here for anyone looking to do the same.

People reading this in the future: please do do not hesitate to contact me if you think there's a question I can answer that might help you out, somehow.

Picking up where I left off:

I met my partner in Phoenix several days before my donation so we could relax before things got intense. I found a Scottsdale long-term Airbnb that was ~10mins from Mayo, so we got checked in and my family arrived on the 13th. A couple of easy days playing tourist was fantastic 🙂

And then, on Nov 14th 2018 somewhere around 7am, I donated my left kidney to an old college friend.

The experience is not something I can fully describe here. There are a lot of details, lots of very specific memories I have of this time, so if anyone has specific questions (pain? pre-visit prep? nervousness? travel? costs? housing? Mayo details? etc) please reach out. It is just impossible for me to detail everything properly - but I'm happy to dig into specifics for anybody who has a question.

I remain amazed at the number of variables that lined up for this donation: my life, my friend's life, the support and work of both our families and partners, our employers and friends, support from dozens of Mayo's professionals and experts, all the preparations and plans that took place beforehand, the work of all the potential donors who came before me ... just the sheer number of factors and people involved. I feel like there are several million ways this could have panned out - and we both came out on the best side of the best possible combination of all of these untold variables. That's quite something.

I remember one very specific moment, right out of surgery (which would have been right when my recipient was headed in) coming off of the anesthesia - my brain finally wandered back into the world and I finally remembered who I was, where I was, what just happened. Finally knowing that everything after *that specific point in time* was all autopilot - that there were no more unknowns. That the rest was all out of my hands. This moment is now one of my top ten life memories - just lying in a quiet bed somewhere, feeling the world coming back into focus, knowing my part was now a final, complete, and finished thing.

One night in Mayo to recuperate was enough, and then I went 'home' to my temporary spot in Scottsdale for a week of downtime. Lots of books and netflix. My pain remained about a ~2 or 3 of possible 10, which was fine. I owe an indescribable debt to my partner and my family for their help during this time. The support they gave me was amazing, and humbling. My partner in particular shouldered a huge, difficult amount of this experience - she's absolutely the most stellar person I know. I overflow with gratitude for having her in my life.

Mayo warned me about the up-and-down nature of the recovery and damn, were they right: One day I'd feel great, the next day I'd feel like a truck hit me: fatigue, muscle soreness, lethargy. Those up and downs continue to a very lesser degree, but that first week was something.

My recipient did great. He went into this pretty rough, though, so he had a harder experience coming out. His first couple of days were rocky. His story is his own, but from my side it was good to see him finally clear some final hurdles and feel his new 'hardware' kick in and start to enjoy all the hard work we both put in. It was pretty astonishing to hear the post-transplant numbers that they shared with me. Apparently the kidney I gave him is a real go-getter 🙂 It is going to serve him super well.

Today is Nov 28th, 2018, exactly two weeks after our transplant date, and we're both doing super well. I'm finally home, in Oregon, and taking lots of time off of work. My recipient is back in AZ doing the same (he lives there) - neither one of us has obligations for weeks, so we're just regaining our strength and hanging out in our respective towns. It is a good time in both of our lives.

I want to send a huge thank you to everybody here that I spoke with over the last year, and to those who wished me well and shared their experiences with me.

I would love to pay that goodwill forward, and I hope this post helps me do exactly that for someone who may read this and want to know more.

Thank you to all,

- cleverusername
- PDX, 11am, 11/28/2018

Jump to this post

Thank you for sharing. It all takes so long, then goes so fast, I loved that feeling of, "my work here is done".

I really appreciate how much time and care Mayo puts into transplants before & after for both recipient and donor. I don't know if I could have followed through without their support and the support of my family & friends -the online ones too!

You did an amazing, life saving thing and I'm so glad your friend has cleared his first hurdle.

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how do I find someone that can be tested i go on social media and everyone is like this is not the place if it's not the place then where is the place I'm already on the transplant list at Mayo and Piedmont

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@andrea45

how do I find someone that can be tested i go on social media and everyone is like this is not the place if it's not the place then where is the place I'm already on the transplant list at Mayo and Piedmont

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I think your Facebook page is the perfect place, if you have one. Everyone on there should know you and what your going through. I would think they would be supportive of your post.

Blessings,
JoDee

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@andrea45

how do I find someone that can be tested i go on social media and everyone is like this is not the place if it's not the place then where is the place I'm already on the transplant list at Mayo and Piedmont

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Welcome to Connect, @andrea45. My organ transplant is from a deceased donor, so I have not gone through the process of looking for a living donor. However, I do want to refer you to the Transplant Pages, where you will find a recipient toolkit that explains the process, as well as gives some pointers for beginning search for a donor and getting the word out to your friends and family. You will also see a living donor toolkit that explains the donor process to interested people.
https://connect.mayoclinic.org/page/transplant/
From what I have read, many patients are shy about asking for an organ from someone, but if you have read through the previous posts in this conversation, you can see the variety of situations and experiences that members have shared. I am not sure of where you posting your request, but, as JoDee has mentioned your own facebook looks like a good starting point. Ask friends to shar with friends...

Does Piedmont have a program for living donation? Which Mayo location is treating you?
Have you spoken with your transplant social worker or nurse coordinator about this?

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This has been an amazing year!
I donated 2 weeks short of a year ago to a stranger that is now a huge part of my family even though we live far from each other.
It was awesome, scary, exciting and educational. I've learned so much from this journey and feel honored to have been a part of it.
If anyone out there is considering donating, I strongly encourage you to look into it. If you have a family member or friend that you would like to donate to but they don't want you to take the risk or are having trouble accepting your loving gift, send them this way, I'd be more than happy to tell them how much better it has made my life. If you want to donate to a stranger or be part of a donation chain, there is so much support its amazing.
I so appreciate the care and support I received from Mayo Clinic. I know they aren't the only ones that do transplants but if a loved one needed surgery, it would be my wish to have them treated at Mayo. If I could donate again tomorrow, I would without a second thought.

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@mauraacro

This has been an amazing year!
I donated 2 weeks short of a year ago to a stranger that is now a huge part of my family even though we live far from each other.
It was awesome, scary, exciting and educational. I've learned so much from this journey and feel honored to have been a part of it.
If anyone out there is considering donating, I strongly encourage you to look into it. If you have a family member or friend that you would like to donate to but they don't want you to take the risk or are having trouble accepting your loving gift, send them this way, I'd be more than happy to tell them how much better it has made my life. If you want to donate to a stranger or be part of a donation chain, there is so much support its amazing.
I so appreciate the care and support I received from Mayo Clinic. I know they aren't the only ones that do transplants but if a loved one needed surgery, it would be my wish to have them treated at Mayo. If I could donate again tomorrow, I would without a second thought.

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I feel the same way, though I donated to my husband...but I'd surely do it again. It's not as rough as one might think if you are a healthy donor. I am 65 - and still came through with flying colors!

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