Share Your Spare

I’m generally uncomfortable drawing attention to myself, but today, I am doing so to bring awareness to something that is now very important to me and hopefully inspire even one more person to consider the same. After a very odd and often frustrating 2020, doing something big for someone else has reminded me of the power we all have to make a difference and how rewarding doing something for another person truly is.

I have a family member who has been suffering from a genetic kidney disease for the last 20 years. He knew this disease would continue to damage and eventually destroy his kidneys, so he began to participate in drug trials to hopefully slow the progression. While the trials did help delay total kidney failure to some extent, his condition finally got too bad for him to continue with the trials, and he was placed on the kidney donor list. Right now, nearly 100,000 Americans are on that list, with an average wait time of three to five years to get a transplant. Unfortunately, he may not have been able to wait that long, especially because he has a hard-to-match blood type. Several family members tried to go through the donation process but could not continue for various reasons. Additionally, requests went out for Good Samaritan donors in multiple ways (e.g., social media posts, bumper stickers, etc.). While it may seem extreme or odd for people unaware of the problem, it is often what many families resort to despite the discomfort of asking random strangers for something so big. Sadly, this effort did not turn up any donors, and with his kidney function down so low, he was now at kidney failure; things were not looking good.

Honestly, I don’t know why I never went in to see if I could be a donor earlier than I did. Perhaps it was the belief that there is always someone else out there willing to take care of things that needed to be taken care of. In college, my basketball coach used to say, “Somebody. Anybody. Nobody.” usually when we weren’t boxing out or chasing a loose ball or something. It means that when people see something that needs to be done, they think that everyone else sees the same thing, so there must be somebody willing to do something about it, and thus we all wait idly until they do. After no one steps up, we stop and think, “Well, isn’t anybody going to do something about this?” and again wait for that to happen. Eventually, nobody ends up doing anything, so the rebound never comes, or the piece of trash on the sidewalk never gets picked up, or in this case, a kidney doesn’t get donated in time.

Thankfully, inspiration that maybe I could be that “somebody” finally hit so I called the transplant center with whom he had been working to start what would be a nearly six month evaluation process. I filled those months by reading and learning as much as possible about the procedure and what it would be like for me afterward. Some people spent quarantine learning new languages and making the perfect sourdough starter; I became versed in GFR and creatinine levels. Of course, I was also subjected to so many tests. Doctors want to do everything they can to ensure that a living donor will continue to have a healthy life following the donation, so they give you the once, twice, million times over before you are cleared to donate. There were psychological evaluations, heart tests, CT scans, x-rays, and more blood tests than pairs of sweatpants I have – and trust me that is a high bar to clear! If there were even one hair out of place on my head, they would have found it. Thankfully though, nothing significant came up − a huge bonus of simply going through the evaluation part of the process is knowing that I’m in good health.

After months of testing, I finally received the call to say that I was a match. From what I understand, everyone reacts differently to this call, and I wish I could look back and say I started doing a little dance or running laps in the grocery store parking lot where I was standing, but my reaction was subdued. Of course, I was happy that I could do it, but I would be lying if I didn’t say I was also scared and uncertain. It’s one thing to go through all of the testing thinking that you would totally do this, and completely another thing to actually sign on the dotted line knowing what you will be putting yourself through. And not only that, but you never know what is going to happen to you in the future and there may be a time when that extra kidney comes in handy. I had told myself that I would take at least a day to think about it before I committed−giving myself that space.

So, my husband and I talked through it for the millionth time, only this time it wasn’t just a hypothetical exercise. I went to bed feeling pretty confident about moving forward, yet hoped that sleep would give me any additional clarity I needed (just read Why We Sleep to see why that makes sense). And it did. I woke up early the next morning completely energized. I had so much excitement inside of me, I decided to go for a run even though it was pitch dark outside just to release some of it. I spent the majority of my time thinking about how incredibly lucky I was to be in this spot. Many people want to donate to strangers or loved ones but cannot – here I was with an entirely clean bill of health and had been given an amazing opportunity. I often feel like there is no way I can personally make a difference in this world and yet here I was staring right at the chance to not necessarily change the entire world, but to at least be able to change the world for someone else. I can’t really describe how that felt, but I think the tears I cried during those miles said enough. So, I donated!

On December 2nd, I underwent surgery to donate my left kidney. I can’t say that I wasn’t scared because I was, and due to all of the COVID protocols, my husband couldn’t join me in the pre-op area, which made it even more unsettling. For two hours, I sat there alone in my ill-fitting gown as (seemingly) hundreds of doctors and nurses asked me questions, poked me with stuff, marked up my body, and put all kinds of contraptions on me. Right as I was wheeled away, I started crying−partially because I was tired as I hadn’t slept well for the few days leading up to it, partially because of fear, and part of it was gratitude. But I didn’t have long to think about all of that because almost immediately upon entering the operating room, something powerful was placed in my IV, and I was out.

I remember absolutely nothing during the two-and-a-half-hour procedure (thank goodness right?) and emerged in a pretty big fog, but just like that, it was over. I was definitely in some pain but considering the major procedure I had just been through, it wasn’t terrible. I was also reminded how much of our daily movement relies on the core because any tiny shift resulted in a vivid reminder about what had just occurred. But shockingly, I was up and walking down the hall later that same day to visit my relative, who had also had a very successful surgery. Before surgery, his kidney function was 11% and had been under 50% for nearly two decades. Now it was already at 85%! He even won “best blood test results” on the hospital floor out of the other six transplants that occurred that day (one other living donor). None of this is a competition, of course, but I couldn’t help feeling proud that ‘lefty’ was representing herself so well already−and that she clearly was not missing being with me!

I’m crying a little bit (clearly a common theme throughout this story) just thinking about how incredible that is, and also so thankful for the miracle of modern medicine. Not only has it brought us a vaccine to a pandemic faster than we could have ever imagined, but it also made it so my relative could have kidney function better than he can probably remember, and that his life has likely been extended and changed in a variety of other ways as well. In the grand scheme of things, it hasn’t taken that much from me. I try to do what I can to help others by donating time or money or helping a neighbor or friend in need, but nothing can come close to what this felt like and the power of seeing it happen right before my eyes. I may still be on a high from the whole thing, but I can’t imagine being able to give a more significant gift for the rest of my life.

I’m a few weeks out now, and aside from the visual evidence of the incisions and the fact that I’m sidelined from much activity besides walking and maybe slowly running for the next few weeks, I feel almost back to normal. There were a few days where the pain was a little more noticeable (and I still fear an oncoming sneeze more than anything right now because that was not pleasant), or I was a little more tired than usual, but shockingly the recovery has not been that difficult. While I immediately lost some kidney function, my remaining kidney will grow in size slightly to compensate over the next few months; and there is every reason to believe I will be back at full function very soon. I’m already planning on running a marathon on my donation anniversary date!

I know this is VERY different from our typical blog posts, but I wanted to share my story to hopefully spread awareness around living kidney donation. While there is always the chance something could go wrong, and that should be carefully considered, the risks to the donor relative to the benefits to the recipient are so lopsided in favor of the recipient that it was a no brainer for me. Even now, I like to think that if I didn’t match my relative, I still would have done a paired exchange or been a Good Samaritan donor (there are incredible stories of chains of donation that you can be the spark of). Being able to change someone’s life so explicitly is an incredible gift, and it is one that I will be forever thankful that I was able to do personally.

As we start a new year that is hopefully not as disorienting as the last, I hope that sharing this story encourages just one other person to go through the process. Your experience will be different in its own way, but what I know will be similar is the impact it will have on someone else’s life and the indescribable way it will make you feel. Here’s to a great 2021, now go be the “somebody”!

Quick Facts

  • There are currently 91,681 individuals who need a kidney in the United States
  • Over 3,000 people per month are added to the transplant list.
  • There have been over 35,889 transplants so far in 2020 – 30,679 of which came from deceased donors, and 5,210 came from living. (Think how many people’s lives could be impacted by more living donors!)
  • On average, a kidney from a living donor results in a longer life expectancy for the recipient
  • A kidney donor has no change in life expectancy post donation and only a 1% increase in the chance of kidney failure (that is due to other causes, not as a result of donation).
  • You don’t have to know someone who needs one to do it; you can reach out to a local transplant center or go to the National Kidney Registry.

Resources

  • National Kidney Registry – Become a donor!
  • National Kidney Foundation – Learn more about kidney disease and the donation process
  • UNOS – Has lots of information and statistics around organ/tissue donation
  • Kidney Donor Athletes – I visited this one a lot because I was concerned about being able to continue running, lifting, etc. with only one kidney. Spoiler, you can continue doing almost anything (unless you are a UFC fighter). The site has so many stories of regular people donating, often to strangers, who then continue to do all the things they used to−even ultra-marathoners−which let’s be real, I wasn’t going to do even with my two kidneys.

Read our latest blog, Lessons in Life and Leadership in 2020 >