Confessions of a Kidney Donor

In the 2013 presentation at TEDxBeaconStreet, Allyssa Bates recounts her experience where she donated her kidney to her brother who had Chronic Kidney Disease (CKD).  Below is the transcript of her talk.

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Video Transcript

March 11th, 1975 -- this was the day that I became a kidney donor.  But I just didn't realize it. This was the day that my younger brother, Christopher, was born. Now, he wouldn't begin his battle with kidney disease until 1992.  And spoiler alert, everybody, he is fine, so relax. And I wouldn't need to donate until 2005.

But our story begins on this day, because this is the day that I became Chris Bates' big sister.  I'm a big sister who is also an alarmist. When I go to the movies, I always check to make sure I know where the exits are.

Now, don't worry, I've got you covered, they're behind you and over here, so if there's an emergency you can get out.  I'm probably the last person who still reads the safety card when I fly.  I'm always making sure I'm checking the safety card in the seat back in front of me.

But the way that I combat my alarmist tendencies is to over-research and hyper-prepare.  So, when I was considering becoming a kidney donor, my first thought was, "No worries, I'm going to consult the manual for potential kidney donors."

Well, you can imagine my chagrin when I discovered that there was no manual. There was lots of information about what life would belike post-transplant for my brother.

There was lots of information about the tests that I would need to take to determine if I was a good match. But, nowhere could I find any information about what life would look like for the donor post-transplant.

And as Butch mentioned, I am an athlete.  I swam competitively in high school, since then I've run 10 marathons, 7 of which were Boston. I've trained people to do the Boston marathons. It’s part of who I am.

What if what I loved I won't be able to do because I was a donor?

I've since then moved from my alarmist tendencies to being an evangelist. Kidneys from living donors last twice as long as kidneys from cadavers. The actual average lifespan of a cadaver kidney is 8 years, which is why I'm here today. I wanted to make sure that I at least made it past the average lifespan for a cadaver kidney.

So, I could be here as a "good" living kidney donor. But, as this evangelist, it's important - when I donated my kidney in2005, 950 more people donated than in 2012. And this is a problem, and what I'd like to acknowledge right now, that there are many reasons why you would and should say "no" to being a kidney donor, my hope is that fear, that you won't be able to live an active, and even athletic life is dispelled by this talk today.

The best way I know how to do this is to share our story with you. Christopher and I grew up in Ithaca, New York, and I was busy swimming and participating in student activities. Christopher played hockey and lacrosse.

And again, I was a typical big sister, I firmly believed that it's my job to pick on my younger brother, and I was really good at my job. I picked on him mercilessly, but woe to anybody else, who tried to pick on him, because I would swoop on in.

I'm a type A, Christopher is a type B.  When would actually stop in the middle of the play, and make sure that they were okay. His competitive older sister would never have done that. But, basically we had a fairly typical life.

My parents spent a lot of time making sure that they got us to the right activities at the right time.  Until one day, our life got a little less typical. Christopher had gone in for his annual physical so he could participate in fall sports. And we got the message on our answering machine, that you never want on your answering machine.

"There has been a mistake, we're sure it's a fluke, but we need Christopher to come back in, and get retested."

Christopher dutifully went back in, and unfortunately, there wasn't a mistake.  We had just assumed that he had 2 kidneys, and in fact, he only had one.  And where you can totally live with only one kidney, his was failing - it was diseased.

So, you've already spent a few minutes with me, you know I'm that type A person, when I hear that there is a problem, I want to solve it immediately.

But from the day that we discovered that he only had one kidney, until the day that we actually had a discussion about transplantation, it was almost 11 years.

When we had that discussion, Team Bates held a family meeting. And like many of you in the audience, who are parents, my parents immediately said, "This will be us. We'll do this." But unfortunately, one of the side effects of being a kidney donor is it raises your blood pressure. And since my parents both had slightly elevated blood pressure, they were disqualified.

I'd like to give you a little insider intel here.  I finally know that people feel comfortable with me as their friend, when they'll come up to me and say,

"So, tell me, Alyssa, how exactly did your parents and your brother ask you to be a kidney donor?"

Well, in fact nobody asked me. While my parents were getting tested, I started to ponder that question, "You know, what if this comes down to you?"

My first response was enthusiastic, "Yes, I'll do it!" But then I started to think about it, "What if I wasn't going to be able to run my beloved Boston marathon?

What was this going to mean for me?" Now, I'm a person of faith, but this shook me to my core. This was when that manual would've been really handy.

I was frustrated, I was confused, I was angry, and I needed help. So, I started my journey at the door of my parish priest. I knocked on his door, and when he opened it, I blurted out, "I am mad at your boss!"

He still let me in, which was really nice, and very, very kindly said, "Alyssa, I get pissed at God all the time, you tell me why you're ticked off and sit right down."

And that experience was so freeing and so wonderful, that I then reached out to other friends. Some of whom would let me cry. At 31, this was not the decision I thought I was going to have to make. Some of them would give a little tough love, "Buck up, little camper, you can handle this, let's go." And with their help, I was able to get that hand back up to "Yes".

Two main reasons for that:

-At that time several of my friends had family members who were suffering from serious medical conditions -cancers, tumors, for which there was no cure.  I became tremendously grateful that we had a solution to this issue.

-And secondly, my baby brother was struggling. The little boy who would wake me up at 6 am on Saturday morning to play street hockey, would walk a mile and would then have to sleep for an hour because he was exhausted.

And again, you'd think, I then made the offer to be the donor, began the testing and was accepted. And again, I was hoping that things would move a little bit quicker, but no.

This was a good thing. Christopher, due to his focus on his health, and working out, and his diet, was able to hold on to the kidney fortwo more years.

When we got to the donation he actually had not ever had to go on dialysis, but his nephrologist reassured him that he was a sneeze away.

Finally, it was "go time" - On June 1st, 2005, Team Bates arrived at Strong Memorial in Rochester, New York. I received the question that I had gotten throughout the entire process, whenever I met with a medical professional--and that was, "Are you sure, Allyssa? Because if you are not - we're going to tell your parents and your brother that there was a problem with your medical tests and you can't do the surgery."

Literally up to the morning of the surgery I could have gotten out of it. But, I reassured them that, "Yes, I was sure. We were good to go."

And thus began the marathon day.  And, I would argue that this was a much harder day for my parents than it was for me and Christopher. We had the easy job.

Picture it, my parents had to wait with me at the gurney, kept me company, held my hand, and just kept me calm.

Then they had to let me go into surgery.  They then walked over and kept Christopher company until they came for Christopher. And they had to send him to surgery. Both of my parents had medical backgrounds.

Normally, it's a good thing, but I would argue on this day, they perhaps knew a little too much information about what could go wrong.

My mom's quote about the day, I think, sums it up perfectly, "Never when I became a mom and signed that contract, did it say I'd haveto put both my kids on the operating table on the same day."

We were all very relieved when Christopher and I got off the table. We didn't spend a lot of time at Strong Memorial.  Our surgery was on a Wednesday. I was released on Friday, and Christopher was released on Sunday.

And it began a fairly typical recovery from major surgery. Except, remember, you've got that type A competitive athlete, who needs a goal.

So, I decided that I needed to train for the Boston Marathon, and I needed to run it the following April.

My practice, my training started that first day - that Wednesday, when I walked around the nurse's station twice. Then, when I got home to Ithaca I made it to the stop sign and back.

And the finish line on Boylston Street seemed thousands of miles away, but I kept up with my training and on April 17th, 2006, my father and I crossed the finish line.

My T-shirt read: "Kidney donor, June 1st, 2005. My other kidney is at the finish line."

But I realized that this wasn't exactly a finish line in fact, this was a start line - I was back. Christopher was thriving. In fact, atone point in our recovery process, Christopher's levels were slightly better than mine, leading his snarky older sister to say, "Dude, I said you can have a kidney, just not the best one."

Christopher, not to be outdone by his snarky older sister, when the doctors asked him, "You know, what do you credit, the fact that you've never had a fever, you've never even started to reject this?"

Christopher quipped, "Well, you've met Allyssa, you know how bossy she is, now she can boss me from the inside."

But our recovery has been remarkable in the fact that it has been fairly unremarkable.  Christopher professes to a newfound love of chocolate chip cookie dough cheese cake, which I've always loved which he didn't have a taste for until the transplant.

He, also, is often criticized now for speaking too fast, which I've always had an issue with, but which he had never did.

The one thing that we've had to be aware of is - we had to be aware of our hydration.  So, our new family mantra is - "No water left behind." And you'll usually find Christopher and I with a water bottle in hand.

Now, I was very fortunate to be a donor to Christopher because we were a familial match, our story has a happy ending.

But there are lots of stories that are still being written. But because of "kidney dominoes" right now if you want to donate to somebody and you are not a match to them, that's okay.

You can donate your kidney, and somebody else will donate their kidney to somebody else, till eventually your person will get a kidney.

And you'll help numerous people in the process. And here's why that's important: I purposely tried not to overwhelm you with stats, but here are a few - There are currently 96,645 people on the wait list for a kidney.  While they are on this waitlist, these people have to undergo 12 hours of dialysis a week, which as you might imagine really negatively impacts their ability to hold a job, and just to live a normal life with their family. 4,500 people will die while they wait for those kidneys.

If you do the math, that's twelve people who will pass away today. Chris and my story had a fantastic ending, and we feel really lucky that we were able to do this.

My hope is that after seeing this talk, you will actually use it as your manual, and it will be your starting point for you. I recognize that, yes, it might be terrifying for you - Please know, that, no, it's terrifying for those 96,645 people on the waiting list.

Chris and I have done this fantastic journey, but at the end of the day, I'm just his sister, and he is just my brother, and I still love picking on him, and now I've got this great thing that I can lord over his head. So, whenever there's a holiday that involves gifts, I give the standard response to Christopher, "What a lovely book, it's not quite a life-saving organ, but it's nice."

It drives him crazy, which means I'll keep doing it because I'm his big sister, and that's my job.

I'd like to thank you for your attention, and I'd like to give special thanks to Christopher, who let me share our story with you today.

Thank you!

About the Speaker

Allyssa Bates – After working in Higher Education and the fitness industry, Allyssa Bates is currently working as the Director of Organizational Development at Trinity Life Sciences. She is a marathon runner, Spin instructor whose experience as a kidney donor has enriched her life!

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Patient Education Disclaimer

This material is for informational purposes only. It does not replace the advice or counsel of a doctor or health care professional. KidneyLuv makes every effort to provide information that is accurate and timely, but makes no guarantee in this regard. You should consult with, and rely only on the advice of, your physician or health care professional.

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