In 2013, I weighed 210 pounds. In October of 2017, I weighed 136 pounds and donated a kidney to my youngest son, Ax. This is our story.

Like most people, I wasn’t always overweight. I’m a pretty small guy—5-foot-6-inches and around 150 pounds for the longest time—and for years I worked a job where I spent a lot of time on my feet. But when I switched careers to write for a living, that changed—I went from walking seven or more miles every day at work to sitting behind a keyboard. I didn’t think about it at the time, but I should’ve changed my lifestyle as a result.

I started writing full-time in April of 2011, so it was right at the transition from winter to spring (in Texas, anyway). When cold weather came back around, a harsh realization came with it: none of my cold weather clothes fit. I had gained quite a bit of weight without even realizing it.

Me at my biggest (or very close to it)

Still, I didn’t do anything about my sedentary lifestyle or eating habits—I just bought new clothes. Eventually, I reached my maximum weight of 210 pounds. At that point, I knew I needed to do something, so I decided to get active. I bought a bike because I enjoyed riding as a kid, but it didn’t work out well. It just wasn’t as fun as I remembered it being, which retrospectively makes a lot of sense—I was incredibly overweight and out of shape. I ultimately ended up selling that bike and going back to my previous lifestyle of sitting on my ass and eating way too much food.

Then, close to the end of 2013, I decided enough was enough, and it was time for real change. In August, my wife and I walked into a bike shop to take a look, and I ended up leaving with a Specialized Sirrus—my first “real” bike and something that would ultimately change my life forever. It was a birthday gift from my wife, who was apparently just as tired of me being overweight as I was (or maybe more).

Then and (basically) now.

The Start of My Weight Loss Journey

The Sirrus, which is from Specialized’s life of hybrid road-style bikes, was the first bike I’d ever owned that didn’t come from a box store. Before that bike, I couldn’t have imagined spending $500 on a bicycle, but after riding it for the first time, I understood the fuss. I understood why getting on an appropriately-sized bike mattered, and I realized how much nicer shifting felt. This was the bike that got me excited about riding bikes.

It didn’t start easily, though—five miles was about my max distance before I felt like I was dying. I did smaller distances like that for a few months with little-to-no weight loss (I think I dropped five pounds or so over the first couple of months). Frustration crept in, and I almost gave up. Instead, I did some research and learned what I should’ve realized all along: diet is a crucial part of weight loss. Saying it out loud now it seems so silly and obvious, but back then I just thought if I were more active I would start losing weight. Nah.

My first bike (well, as an adult).

So I started researching and read about CICO (calories in, calories out), which is a tried and true method of losing weight for many people. The gist is pretty straightforward: burn more calories than you take in, and you’ll start losing weight. Because of genetics, some people lose faster, and others struggle more with hunger pangs and blood sugar issues, but barring any medical issues, this method should work well for most people. I downloaded MyFitnessPal from Google Play and started tracking my intake.

I tracked my normal intake for a few weeks (without trying to cut anything out) to see how much I was eating on an average day. It was a lot. MyFitnessPal offers a pretty straightforward way to figure out how many calories you should be eating on a day to lose weight at a specific rate (one pound per week, half a pound per week, etc.). I plugged in my numbers to lose a pound a week and started my journey.

The thing is, I also needed a way to track how many calories I was burning on the bike. This may come as a surprise, but that’s not as easy as it sounds. Pretty much every app out there that tracks activities and shows calorie burn uses proprietary algorithms with results that can wildly vary, even by as much as double. I tested so many apps in the early days but ultimately ended up settling in with Runtastic (Android, iOS). It seemed to provide what I assumed was the most realistic calorie information at the time given my limited experience with this sort of thing.

For the first few weeks, I didn’t lose any weight, and I stayed hungry all the time. It was maddening, and I wanted to give up more than once, thinking it “wasn’t working.” But I stayed the course, kept riding my bike, and watching my intake. After about three weeks the numbers on the scale started to drop, and once the weight started coming off, it started dropping at a dramatic rate. I continued riding and tracking well into the following year, losing upwards of 40 pounds.

By the end of 2014, I was down to around 165. While I was down quite a bit, I was still technically overweight according to my BMI (I started at “obese”). I had made good progress, but there was still a lot of work to be done.

Then, our world got rocked.

A Christmas to Remember

In December of 2014, my youngest son was diagnosed with Focal Segmental Glomerulosclerosis (FSGS), a rare disease in children that causes kidney failure.

When my youngest son was born at the beginning of 2012, he had a small skin tag on his ear. This raised concerns because the kidneys and ears are formed around the same time in the womb, so a deformity on one could mean issues for the other. They did an ultrasound on his kidneys, everything looked fine, and we didn’t think about it again.

He was always a small baby, but since my wife and I are also both pretty small, it wasn’t something that raised concern for us or his doctors. Around mid-2014, however, we noticed he wasn’t gaining any meaningful weight. Around the same time, we noticed that his eyes were puffy every morning. We decided to take him to the doctor.

Initially, neither thing was a cause for concern. Like us, the doctor suspected seasonal allergies were the cause for his puffy eyes. As for the weight gain, the doc suggested a gluten allergy could be the issue and put him on a gluten-free diet. After a few weeks, it seemed to be working—he was packing on some pounds!

It turns out we were all wrong.

The week of Christmas 2014, my little guy got the flu. This was the first time he’d ever been sick, as we always took the necessary precautions to keep him healthy. On Christmas day, he was too ill to even get out of bed—he just wanted to sleep, even while we opened gifts. That night, my wife noticed that his legs looked swollen. We waited overnight to see if he was better in the morning, but by the next day, it was clear something was wrong.

Christmas Day, 2014.

My wife did some research about swollen legs and found something called “Nephrotic Syndrome,” which is sort of a blanket term that means the kidneys aren’t working as they should. We have four other kids collectively (our youngest is our only one together), so she stayed home with them while I took our son to the emergency room.

There was no one in the ER since it was the day after Christmas, so we were seen almost immediately. I told the doctor about Ax’s symptoms, making sure to mention Nephrotic Syndrome (which honestly I had no idea what I was truly suggesting at the time) and he did an initial exam. Within a few minutes, he looked at me and said:

“I need you to do something for me. I need you to put him back in your car and drive to the Children’s Hospital [in Dallas, TX]. Can you do that? If not, I’ll get an ambulance to take you. There’s no charge for this visit, and you need to take him right now.”

Wow. My mind was racing. What was wrong? Why the urgency?

I called my wife, we took the other kids to my mother-in-law’s house, and got Ax to the emergency room at Children’s Medical Center in Dallas, TX (a 30-minute drive from where we lived at the time) at around 7:00 PM on December 26th. He was lethargic and looked terrible. They ran several tests, but when they tried to take a urine sample via catheter and his bladder was completely dry, we knew something was very wrong.

Around midnight that night, they told us his kidneys weren’t functioning correctly and admitted us. At 7:00 AM this following morning, he was in surgery to get a hemodialysis catheter. He was two years old.

The “weight” he had been gaining was fluid retention. The puffy eyes were the first signs of Nephrotic Syndrome. The swollen legs were caused by edema. His kidneys had been failing for months, and we had no idea—his doctor had no reason to suspect anything could be wrong with the kidneys either, because why would he? Kidney failure in children is very uncommon.

This picture was taken about five weeks before he was diagnosed. Note the puffy eyes.

Here’s the real scary part: they told us that if we had waited one more day to bring him to the ER, he probably wouldn’t have lived. He was that close to death, and we were utterly clueless. The very thought of it hits me in the pit of my stomach in a way that I can’t put into words.

The Diagnosis that Changed Everything

We met our nephrologist the morning before surgery, and he explained what was going on and what to expect. He told us that Ax would need to be on dialysis to remove the excess fluid from his body—this fluid was toxic, after all. Since his kidneys weren’t working as they should, the stuff that’s normally filtered out through urine was leaking back into his body. Into his bloodstream.

As any parent would be, my wife and I were both distraught. But the nephrologist walked to me and said something I’ll never forget as long as I live. He put his hand on my shoulder and said “I want you to know that this isn’t our first time dealing with this. But I want you to understand that we know it is yours.” I still can’t think about it without tearing up. Those words meant so much to me, and to this day that’s probably the most meaningful thing anyone has ever said to me.

Ax was in surgery for a couple of hours (if memory serves; that whole time frame is kind of a blur) and started his first dialysis treatment almost immediately after. The fluid had to start coming off quickly, though it had to be a gradual process.

The hemodialysis catheter. It was a main line into his heart.

Initially, he had dialysis four times a week, and we were in the hospital for a total of three weeks. During that time, he had a kidney biopsy done to pinpoint what was going on and find out if it was chronic or acute. Some diseases, like strep throat, can cause acute kidney failure in children, so they’ll only need to be on dialysis for a short period till the kidneys bounce back. At that point, that was our best-case scenario.

But that’s not the case we got. When the results of the biopsy came back, they were conclusive: it was chronic. While it was still a few days before we got the official diagnosis (FSGS), we already knew one thing: he had End Stage Renal Disease (ESRD) and would need a kidney transplant. In the meantime, he would remain on dialysis until he was big enough for transplant surgery.

After a couple of weeks on dialysis. He already looked like a different kid!

After the biopsy, he peed one more time, and that was it. For three years, he didn’t pee and relied on dialysis to keep his system clean. He stayed on hemodialysis for four months, after which we switched to peritoneal dialysis, a type of dialysis that we were able to do at home and is much easier on tiny bodies.

At the time of our first admittance to the hospital, I was around 165 pounds. When we got out in January of 2015, I was down to roughly 150 because I didn’t eat much due to stress, depression, anxiety…and every other negative emotion you can experience. But in the following months, I ate too much and jumped back up to 175—also thanks to stress. Funny how that works.

Getting My Head Back in the Game

It took a few months to get my head back in order and resume my weight loss goals. I can’t overstate the toll it takes on your body and mind having a chronically ill child—the depression, the guilt, the heartbreak, the fear of the unknown—it’s all so hard to process. We were so focused on him, and I didn’t think about my own health goals at all.

But eventually, we settled into a “new normal”—life on dialysis, the daily medicine regiment, and caring for a chronically ill child. After a few months, I knew it was time to re-focus on my health. After all, how was I to help him if I couldn’t help myself?

This time I upgraded to a new bike—a road bike, a “gift” to myself for having met my first weight loss goal of 40 pounds—and started training with better metrics, including heart rate data. I had moved away from using apps like Runtastic to keep up with my cycling activities and switched to Garmin’s cycling products—an Edge 510 at that point.

My first road bike. Specialized Roubaix.

I found the Garmin more accurately tracked burned calories than anything else, mostly because Garmin’s metrics are dynamic. It “learns” your body and activity levels, then estimates your workload by using a combination of age, heart rate, and terrain data. It’s smart and as close to accurate as you can get without a much more expensive system. (And honestly, the buy-in cost of just moving to a Garmin alone is expensive enough.)

This is around the time when I got more serious than before about weight loss. I started using MyFitnessPal to track calories again and added a Runtastic Libra scale to track my weight and other body metrics. There’s some question about how accurate these types of body weight scales are when it comes to specific details like body fat percentage, but in my experience consistency matters more than accuracy—if you’re tracking with the same product and the same metrics every day, the results will follow.

This is where tech started to play a much more significant roll in my weight loss. From this point forward, my weight loss was driven by tech, with new gadgets added and becoming an integral part of how I track, train, and even live. The triad of MyFitnessPal, the Garmin Edge 510, and Runtastic Libra scale helped me get down to my goal weight of 155 pounds—a loss of 20 pounds on the year and 55 pounds overall—where I remained through the end of 2015.

In 2016 I got complacent with my routines, as I was riding upwards of 500 miles a month on the bike. I assumed that given the amount of time I was spending on the bike, I could eat whatever I wanted. I was wrong. I added around 10 pounds in 2016, putting me back up to 165—back to an unhealthy weight. (Though even at 155, BMI puts me barely into the “overweight” category.)

My dude at the beginning of 2016. You can see his PD catheter on the left and G-Tube on the right.

Kind of ironically, most of 2016 was spent trying to help Ax gain weight. The kidneys do so much more than filter out toxins, and children with kidney failure don’t grow the way their peers do. Combine that with the fact that dialysis is very hard on the body and removes all desire to eat, and well, it’s a recipe that makes it incredibly difficult for any kid in that situation to gain weight.

But we stayed the course, doing everything we could to get him up to transplant weight (16 kilograms). By the end of 2016, we knew that 2017 would be the year for the transplant.

My wife and I had decided early on that I would be first in line for possible donation. And with 2017 the year it was finally going to happen, I needed to get my body ready to not only donate but also bounce back from surgery. While I spent 2016 largely on autopilot, 2017 was the time to get back to work.

Using Tech to Get in the Best Shape of My Life

On January 1st, 2017 I dramatically overhauled my diet. I once again started using MFP religiously. I cut out all drinks aside from water and coffee—I wanted my kidneys to be as clean as possible for donation. I monitored my water intake. I took better care of myself than ever before. While I had previously lost 55 pounds, I feel like my biggest health gains came in 2017.

My guy and me at the beginning of 2017.

I added a power meter to the bike I was on at the time, which is the most accurate way to track calories burned. Power meters use strain gauges to calculate how much power—measured in watts—you’re physically putting into the pedals. One watt equals one calorie, so you know exactly how much you burn on any given ride with utmost accuracy.

But that was just the tip of the iceberg for me. I also picked up a bike trainer—a tool that lets you ride your bike indoors—and soon after found a program called TrainerRoad to use with it. If I had to pick one thing that helped me achieve my fitness goals more than anything else, it would be TrainerRoad.

My current trainer, a Wahoo Kickr Snap.

Here’s the thing with indoor cycling: it kind of sucks. Being outside on the bike is one of the best things about cycling, and the nuances of the road keep things interesting. Indoors, you’re just spinning. It’s boring, and it’s hard to stay motivated. Thirty minutes feels like an insanely long slog on a trainer. But TrainerRoad changed that, for me at least.

It uses structured interval training to help riders get in better shape—it helps them get faster. Most TrainerRoad users use it as part of a training plan to get faster for racing, but I had a much bigger goal in mind—I wanted to shed weight and be in the best shape of my life for transplant. TrainerRoad helped me in more ways than just physically, though.

Six weeks with TrainerRoad whipped me into a stronger rider than three years of consistently riding outside. That was mostly because of the physical gains, but there was an element here that I hadn’t expected: the mental change. With TrainerRoad, you’re forced to keep going when you think you can’t. It showed me how deep I could go—how deep my pain cave really is. When I would’ve normally backed off outside, TrainerRoad showed me that I could push through and keep going far beyond what I ever expected.

My current bike, a Cannondale CAAD12 Disc, on the trainer.

Breaking that mental barrier meant so much more to me than just riding bikes—it showed me how much I could handle. My son was my motivation, and every time I wanted to back off, I thought about him. I thought about everything he had been through, how hard he fought every single day just to be normal. The emotional response to that was everything I needed to get through the toughest of workouts, and TrainerRoad helped me dig deep to find that. Now I apply that sort of “dig deep” mentality to so many other aspects of my life.

I started using TrainerRoad with a “traditional” trainer, but soon upgraded to a smart trainer—one that the software could control remotely. This further forced me to hold my intervals at the prescribed power; even when I wanted to back off, I couldn’t. This pushed my fitness to levels that I would’ve never reached on my own.

I used that get stronger on the bike, get in better overall shape, and continue to drop weight. I did all this while undergoing the necessary tests to be a donor (and believe me, there were so many tests). I filled out the Living Donor Transplant Application on March 3, 2017. I started compatibility testing on April 13.

On August 22, I was approved to be his donor.

On October 9th, 2017 I walked through the doors of UT Southwestern in Dallas, TX at a svelte 136 pounds—74 pounds lighter than my starting weight in 2013 and 29 pounds from the beginning of 2017—to donate a kidney to my then-five-year-old son. This is us the day after the transplant, October 10, 2017.

I was only in the hospital for one night. He was in for 11 days while they adjusted meds and made sure the kidney didn’t reject.

This was the pinnacle of my existence; the highest point I’ve ever been and likely will ever be. And I couldn’t have done it without technology.

Fun fact: they removed my kidney at UT Southwestern in Dallas, but did the transplant on my son at Children’s Medical Center about a mile down the road. There were two surgeons, one working on me and one on him. My surgery started about an hour ahead of his, and both surgery teams were in contact with each other the entire time. As my surgeon was finishing up the removal of my kidney, Ax’s was prepping him. Once my kidney was out, my surgeon went to the Children’s hospital for the final connections of the kidney in my son!

Since the transplant, we’ve both been doing exceptionally well. The doctors and surgeons said his recovery would be much faster than mine—his body was gaining something it was missing and needed, while mine was losing something it always had.

Us the day of transplant, post-surgery

That couldn’t have been more true, either: within three weeks, he was bouncing off the walls like a normal five-year-old boy should be, while I was still lying on the couch struggling to get up. It meant so much to me to finally take the brunt of the burden for a change—after seeing him struggle with his ailment for years and wishing I could take his place, I finally had the chance.

The Tech That Changed My—And My Son’s—Life

That’s our story, and there’s tech sprinkled throughout it. But for those who are interested in everything I’ve used over the years, I thought it might be helpful to pull it all together into an easy-to-read list. So here it is.

Apps and Software

  • MyFitnessPal (Android, iOS): Track calories and macros, available for iOS and Android. An invaluable tool for anyone who is looking to lose or gain weight, or just generally wants to get in better shape.
  • Runtastic Pro (Android, iOS): Track runs, cycling activities, and a lot more. Available for iOS and Android.
  • Strava (Android, iOS): This is the de facto standard for runners and cyclists—it’s like a social network for athletes. Track activities and more with deep metrics and fantastic data. Available for iOS and Android.
  • TrainerRoad: Software for indoor bike trainers that will change your life. Available for iOS, Android, Mac, and Windows.

Bikes and Gadgets

My Stages left-side crank arm power meter.
  • Bikes: While one could argue that there’s nothing “tech” about bikes, I think it qualifies based purely on how much research and advanced manufacturing takes place on modern bikes. When it comes to my bikes, I have two: a 2016 Cannondale CAADX for gravel, and 2016 Cannondale CAAD12 Disc for the road.
  • Garmin Edge: I started with an Edge 510, but later upgraded to a 520. These ultra-advanced cycling computers are some of the best on the market. This was the first product that took my cycling to the next level.
  • Runtastic Libra (no longer in production): This smart scale syncs with my phone (though I’ve had many issues with this feature over the past several months) so I can keep up with my weight and body fat percentage. It’s been a great scale over the years, but it might be time for an upgrade. I’m looking to replace my Libra with the Nokia Body+, which comes highly recommended by the guys at TrainerRoad. If you’re looking for a similar scale, that would be the first on my list of options to check out.
  • Kickr Snap Smart Trainer: My first trainer was a Kurt Kinetic Road Machine, which is one of the best fluid trainers on the market. But the Kickr Snap takes that to the next level. If you’ve been considering an indoor trainer, I wrote a guide on picking the best one.
  • Stages Power Meter: While my Garmin Edge 510 fundamentally changed how I cycle, my Stages Power Meter took my training up a notch. It’s an expensive buy-in, but I won’t ride without a power meter now.

Not everyone has a living donor available to them, and thousands of people die every year waiting on organ donation. If you haven’t already, I implore you to sign up to be an organ donor. It only takes a few minutes and could save a life. 

I want to personally thank every one of you for reading this—seriously, from the bottom of my heart. This was undoubtedly the most difficult thing I’ve ever written. Re-living all the memories from our initial diagnosis—things I haven’t thought about in a few years—was difficult. The pain and tears that came along with this piece were things I didn’t anticipate when I started writing, so I genuinely appreciate you taking time out of your day to live it with me.

Father’s Day 2018
Profile Photo for Cameron Summerson Cameron Summerson
Cameron Summerson is ex-Editor-in-Chief of Review Geek and served as an Editorial Advisor for How-To Geek and LifeSavvy. He covered technology for a decade and wrote over 4,000 articles and hundreds of product reviews in that time. He’s been published in print magazines and quoted as a smartphone expert in the New York Times.
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