Kidney transplant - The Journey from the Donor's Side

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.

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.

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

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

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!

@mauraacro Thank you for your post. I am currently on the inactive list for a kidney transplant. I am hoping to be placed on the active list next June. Just knowing that there are people like you gives me great hope and encouragement!

@marvinjsturing If possible I would send out some feelers now. From what I understand the wait for kidneys is longer than the wait for livers, so if you can find a donor you can get one much more quickly than if you have to wait for a deceased donor. I presume since you are not yet on an active list you are also not on dialysis. I would imagine that can be very difficult but you can do it a home apparently.
JK

@contentandwell I am not on dialysis at this time, however, the reason I am on the inactive list is because when you have had pancreatic cancer, you have to be cancer free for 5 years before you can have a transplant. At one time, someone told me that the "cancer free date" was based on when I had my last chemo. That would have made my anniversary date December of 2019. Last month, when I went to Rochester for my semi-annual checkup, Oncology told me that the "cancer free date" is based on when I had my surgery. My surgery was done in June of 2014 so June of this year will be my 5 year anniversary. A couple of weeks ago, I wrote 2 letters about looking for a kidney donor. It was always hard for me to ask for help when I was healthy. In the last few years, I have learned to ask for help and accept help when it is offered. But it stills feels very strange asking people for a kidney. Maybe it is time to get those letters out again and review them one more time. I wasn't sure if Facebook was an appropriate way to get the message out, but I see in one of your previous posts that others are using it to inform people of their need. (When I went in for my evaluation, I was told that the wait for a deceased donor was 2 to 7 years.)

@triciaodonnell That's interesting that you are 65. Is there an age limit on being a donor?
JK

@contentandwell I am not on dialysis at this time, however, the reason I am on the inactive list is because when you have had pancreatic cancer, you have to be cancer free for 5 years before you can have a transplant. At one time, someone told me that the "cancer free date" was based on when I had my last chemo. That would have made my anniversary date December of 2019. Last month, when I went to Rochester for my semi-annual checkup, Oncology told me that the "cancer free date" is based on when I had my surgery. My surgery was done in June of 2014 so June of this year will be my 5 year anniversary. A couple of weeks ago, I wrote 2 letters about looking for a kidney donor. It was always hard for me to ask for help when I was healthy. In the last few years, I have learned to ask for help and accept help when it is offered. But it stills feels very strange asking people for a kidney. Maybe it is time to get those letters out again and review them one more time. I wasn't sure if Facebook was an appropriate way to get the message out, but I see in one of your previous posts that others are using it to inform people of their need. (When I went in for my evaluation, I was told that the wait for a deceased donor was 2 to 7 years.)