Why I donated my kidney.

Why I donated my kidney.

A TinyLetter from Robyn:

Four years ago today, the last thing I remember was laying in a bed in a pre-op room and the doctor asking me for the final time if I was sure I wanted to donate my kidney. They gave me an easy out - they said they would blame it on a medical issue, that the family wouldn’t need to know I backed out. Even though I was already in the hospital gown, had family waiting on the other side, I could change my mind right then and there.

I can’t explain why I never wavered in my confidence about the decision to donate a kidney to Michael, but I didn’t.

I also can’t explain how I knew I would be his kidney donor on the very first day I met him, but I did.

I met Michael and his mom Sarah for the first time at a park. Michael had just finished his appointment at the hospital and we were meeting to give Michael his cape and do an interview with a local tv producer.

Michael was days shy of his first birthday. He wasn’t yet eligible for the transplant list, but was dependent on receiving dialysis 3 days a week, 4 hours at a time at the hospital.

During the interview, Sarah (Michael’s mom) mentioned that once he was approved for the transplant list, they would be looking for a living donor.

The hamster wheel in my head was turning… in what universe would it be possible for a living child to be an organ donor to another child??? She answered my silent question immediately - adults could donate kidneys to children!

Never once had I given a thought to organ donation other than to check the box on my drivers license. Other than maybe a passing news story, I never considered or knew anything about kidney donation. I definitely couldn’t have told you what dialysis entailed.

But in an inexplicable way, right there, that day, I knew that I wanted to be Michael’s kidney donor.

For a little context, our 3rd son was just 2 months old at the time. He was born with a rare birth defect in both of his feet, so we were in the midst of treatment which consisted of heavy plaster casts and surgeries. So, it is understandable that when I returned home from this interview and told my husband that I wanted to donate my kidney that he would have some pause.

For these same reasons I also understood why my own therapist and an outside psychotherapist would be involved in my approval process - because I knew how crazy it all seemed, but I also knew it was what I needed to do - it was what I was going to do. I was happy to jump through whatever hoops they needed me to, but I had a confident, peaceful resolve about the entire thing.

That was April. Michael wasn’t even on the transplant list, so there was no action to take or conversation to be had.

August came around and on my Facebook feed popped a picture of Michael with a chalkboard - he was on the transplant list. Though 4 months had passed and I hadn’t seen Michael again in that time, my gut was as clear as ever - I wanted to give him my kidney.

With my lack of knowledge, I thought that since I was seemingly healthy and willing, as long as I was a ‘match’ then obviously I could donate. I was wrong.

It took two full months of intensive tests before I was approved to be Michael’s donor. Countless blood draws, urine collection (so gross), scans, evaluations… Michael’s family still didn’t have a clue that I had even considered this. I didn’t want to give them any false hope until I was sure this was going to happen.

At the time I was annoyed that the doctors seemed to want to disqualify me - they were thoroughly searching for any reason that donating would not be in my best interest. It felt like a job interview. In hindsight, I am grateful for the care and consideration they gave on my own behalf - and I am equally grateful that in the end, I was approved.

A panel of specialists had the final vote on my approval - a surgeon, dietitian, nephrologist and patient advocate were among them.

People often express the miracle it must have been that I was a ‘match’. Well, no doubt the whole thing is a miracle - I mean, my kidney is living and thriving in someone else’s body - that is insane! But I think it is important that we change the narrative about being a match. Science has gotten us so far - being a match is important, but not nearly in the way it was 30 years ago.

In October, I was approved, and I was finally ready to tell Michael’s family the news. Since this had been all I had thought about for months now, I assumed they knew - at least had a clue - that I was getting tested. I knew that legally the hospital couldn’t tell them anything, but I figured they must have known. I was as surprised to find out they didn’t have a clue as they were to find out that I had been getting tested!

The butterflies in my stomach were out of control the day I called them to tell them that I was approved for the transplant. It was a FaceTime call I won’t forget - one I’m happy we recorded.

It was a long 3 months of waiting for Michael to grow just a bit (like literally centimeters) before January 17, 2018 arrived, and I found myself in that pre-op room.

There were so many practical and tangible things that had to happen in order to get to that day, but the thing that sticks with me the most is that somehow, deep in my gut, I knew in April that this is where we would be. I have no doubt it was God who provided the clarity and confidence from day 1, and it has forever changed the way I trust myself and the way I trust God through decisions in my life.

Was it crazy to donate my kidney to a little boy I didn’t know while I had 3 little boys of my own at home who needed me? Probably.

If I could go back in time, would I make the same decision? Yes.

Donating my kidney was not just a gift to Michael, it was a gift to me and my entire family. I sense his family’s gratitude every day of the year, but they may never know how much this changed my life as well.

There are 100,000 people on the kidney transplant list and each year only 16,000 people will receive a kidney. Living organ donation isn’t for everyone, but if you feel that tug at your gut, I am the first to encourage you to explore the opportunity. January 17, 2018 was undoubtedly one of the best days of my life. I am forever grateful for the connection I have with this amazing family.

A huge thanks to Alexandria Mooney Photography for capturing the journey in photos for us!

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