In 2013, I weighed 210 pounds. In October 2017, I weighed 136 pounds and donated a kidney to my youngest son, Ax. This is our story.
Like most, I was not always overweight. I'm a pretty little guy-5-foot-6-inch and about 150 pounds in the long run – and over the years I worked a job where I spent a lot of time on my feet. But when I changed my career to writing for a living that changed, I went from going seven or more miles every day at work to sit behind a keyboard. I did not think about it then, but I should have changed my lifestyle as a result.
I started writing full time in April 2011, so it was right at the transition from winter to spring (in Texas, anyway). When cold weather came back, it was hard to realize that none of my cold weather suits. I had a little weight without understanding it.
Still, I did nothing about my sedentary lifestyle or habits-I just bought new clothes. Eventually, I reached my maximum weight of 210 pounds. By that time, I knew I had to do something so I decided to get active. I bought a bike because I enjoyed going as a child, but it did not work well. It was just not as fun as I remembered it was, which afterwards makes a lot of sense – I was incredibly overweight and out of shape. I finally ended selling that bike and went back to my former lifestyle to sit on my butt and eat far too much food.
Since the end of 2013, I decided that it was enough and it was time for real change. In August, my wife and I went to a bicycle 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 present from my wife who apparently was as tired of being overweight as I was (or maybe more).
The start of my weight loss train
] Sirrus, who is from Specialist's life of hybrid road-style bikes, was the first bike I ever owned that did not come from a box shop. Before that bike, I could not imagine spending $ 500 on a bike, but after riding it for the first time, I understood. I understood why to get on a suitable big bike, and I realized how much nicer shifting felt. This was the bike that made me happy to ride a bike.
It did not start easy, but five miles were about my maximum distance before I felt I died. I made less distances like that for a few months with little to no weight loss (I think I dropped five pounds or so in the first months). Frustration shot in, and I almost gave up. Instead, I did some research and learned what I should have realized all the time: diet is an important part of weight loss. Saying loudly now, it seems so stupid and obvious, but then I just thought if I was more active, I would start to lose weight. Nah.
Then I started investigating and reading about CICO (calories calories out), which is a tried and true method of losing weight for many people. The core is quite simple: burn more calories than you take in, and you start to lose weight. Because of genetics, some people lose faster, and others struggle more with famine and blood sugar problems, but excluding any medical problems, this method should work well for most. I fetched MyFitnessPal from Google Play and began to track my intake.
I tracked my normal intake for a few weeks (without trying to cut anything) to see how much I ate on an average day. It was much . MyFitnessPal offers a fairly easy way to calculate how many calories you should eat in one day to lose weight at a certain rate (one pound per week, half a pound per week, etc.). I linked my numbers to lose a pound a week and started my trip.
The thing is that I also needed a way to track how many calories I burned on the bike. It may come as a surprise, but it's not as easy as it sounds. Almost every app out there that tracks activities and shows calorie burning uses proprietary algorithms with results that can wild also vary by twice as much as double. I tested so many apps in the early days, but finally ended up with Runtastic (Android, iOS). It seemed to give me what I assumed was the most realistic calorie information at that time which gave my limited experience of this kind of thing.
For the first few weeks, I lost no weight, and I became hungry all the time. It was crazy, and I wanted to give up more than once and thought it "did not work." But I stayed on the course, continued cycling and looked at my intake. After about three weeks, the numbers on the scale began to decline, and when the weight began to come, it began to fall at a dramatic rate. I continued riding and tracking well into the following year and lost up to 40 pounds.
By the end of 2014, I dropped to about 165. While I was quite satisfied, I was still technically overweight according to my BMI (I started "obesity"). I had made good progress, but there was still a lot of work to do.
Then our world was rocked.
A Christmas to Remember
In December 2014, my youngest son was diagnosed with Focal Segmental Glomeruloseclerosis (FSGS), a rare disease in children who cause kidney failure.
When my youngest son was born in early 2012, he had a small skin label on his ear. This caused concern because the kidneys and ears are formed around the same time in the uterus, so a deformity of one can cause problems to the other. They made an ultrasound on his kidneys, everything looked good, and we did not think about it again.
He was always a little baby, but since my wife and I are both quite small, there was not something that raised concern for us or his doctor. In mid-2014, however, we noticed that he did not get any meaningful weight. At the same time, we noticed that his eyes were puffy every morning. We decided to take him to the doctor.
Originally, nothing was worrying. Like us, the doctor suspected seasonal allergies was the reason for his puffy eyes. In terms of weight gain, the doctor suggested that gluten allergy could be the problem and put him on a gluten-free diet. After a few weeks it seemed to work – he packed a few pounds!
It turns out we were hiding.
Christmas 2014, my little guy got the flu. It was the first time he had ever been ill, because we always took the necessary precautions to keep him healthy. On Christmas day he was too sick to even get out of bed – he just wanted to sleep, even when 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 that something was wrong.
My wife did some research on swollen legs and found something called "Nephrotic Syndrome," which is kind of a blanket term that means that the kidneys do not work as they should. We have four other children 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 nobody in ER because it was the day after Christmas, so we saw almost immediately. I told the doctor about Axes symptoms, be sure to mention nephrotic syndrome (which she really did not clue what I really suggested then) and he did a first exam. In a matter of 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? I am getting an ambulance to take you. There is no fee for this visit, and you have to take him right now. "
Wow. I was racing. What was wrong? Why urgency?
I called my wife, we took the other children to my mother in law and got Axa to the emergency room at the Children's Medical Center in Dallas, TX (30 minutes drive from where we lived on time) around 19:00 the 26 December. He was kidding and looked terrible. They ran several tests, but when they tried to take urine samples via catheter and the bladder was completely dry, we knew something was very wrong.
At midnight that evening, they told us that his kidneys did not work properly and acknowledged us. At 7:00 the following morning he was in operation to get a hemodialysis catheter. He was two years old.
The "weight" he had won was fluid retention. The puffy eyes were the first signs of nephrotic syndrome. The swollen legs were caused by edema. His kidneys had failed for months and we had no idea – his doctor had no reason to suspect that something could be wrong with the kidneys either, because why should he? Kidney failure in children is very rare.
Here's the really scary part: they told us that if we had been one day to to take him to ER, he would probably not have lived. He was so close to death, and we were completely clueless. The very thought of it strikes me in the pit of my food in a way that I can not express.
Diagnosis Changing Everything
We met our nephrologist in the morning before surgery and explained what was going on and what to expect. He told us that Ax would have to be in dialysis to remove excess fluid from his body – this fluid was toxic. Because his kidneys did not work like they should leak the things that are usually filtered out of the urine back into the body. Into his bloodstream.
As any parent would be, my wife and I were both distraught. But the Nephrologist went to me and said something that I will never forget as long as I live. He put my hand on my shoulder and said, "I want you to know that this is not our first time with this. But I want you to understand that we know it's yours." I still can not think of it without tearing up. These words meant so much to me, and to this day it is probably the most meaningful thing ever told me.
Ax was in operation for a couple of hours (if memory earns, all the time is kind of a blur) and started its first dialysis treatment almost immediately. The fluid must start coming quickly, but it must be a gradual process.
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 made to determine what happens and find out if it was chronic or acute. Certain diseases that strike throat can cause acute renal failure in children, so they only need to be in dialysis for a short period of time until the kidneys bounce back. Then it was our best scenario.
But that's not the case we have. When the results of the biopsy came back, they were crucial: it was chronic. While still a few days before we got the official diagnosis (FSGS), we already knew one thing: he had end stage kidney disease (ESRD) and would need a kidney transplant. Meanwhile, he remained in dialysis until he was large enough for transplantation.
After biopsy, he once more stopped, and that was it. For three years, he did not look into dialysis to keep the system clean. He stayed in hemodialysis for four months, after which we switched to peritoneal dialysis, a type of dialysis we could make at home and is much easier on small bodies.
At our first entrance to the hospital, I was around 165 pounds. When we arrived in January 2015, I was down to about 150 because I did not eat much because of stress, depression, anxiety … and all the other negative feelings you can experience. But in the following months I ate too much and jumped back to 175-also because of stress. Funny how it works.
Get 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 not exaggerate the amount of taxation it takes on your body and mind to have a chronically ill child – depression, the debt, the heartbreak, the fear of the unknown – it's all so hard to process. We were so focused on him, and I did not think of my own health goals at all.
But in the end, we decided for a "new normal" life on dialysis, the daily medicine regimen and the care of a chronically ill child. After a few months, I knew it was time to re-focus my health. How would I help him if I could not help myself?
This time, I was upgraded to a new bike, a bike, a "gift" to myself for meeting my first 40 pound weight loss goal-and started training with better metrics, including heart rate data. I had moved from using apps like Runtastic to continue the cycling activities and switch to Garmin's bike products – an Edge 510 at that time.
I found Garmin more accurately tracked calories burned anyway, mostly because Garmin's metrics are dynamic. It "teaches" your body and activity level, estimates your workload by using a combination of age, pulse and terrain data. It's smart and as close as you can without a much more expensive system. (And honestly, the purchase price is for just moving to a Garmin lonely expensive.)
This is around time when I became 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 tasks. There is a 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, the consistency is more than accuracy – if you track the same product and same metrics every day, the results will follow.
This was where tech started to play a much more important role in my weight loss. From this time forward my weight loss is driven by tech, adding new gadgets and becoming an integral part of how I track, train, and even live. The Triad of MyFitnessPal, the Garmin Edge 510 and the Runtastic Libra Scale helped me reach my target weight of 155 pounds-a loss of 20 pounds a year and a total of £ 55 where I stayed at the end of 2015.  In 2016, I became selfish with my routines, as I traveled up 500 miles a month on the bike. I assumed that given the length of time I spent on the bike I could eat what I wanted. I was wrong. I added about 10 pounds in 2016, which put me back to 165 back to an unhealthy weight. (Although even at 155, BMI put me barely in the "overweight" category.)
Typically ironically, most of 2016 were used to try and help Ax gain weight. The kidneys do much more than filter out toxins, and kidneys are not growing as their peers do. Combine that dialysis is very difficult on the body and removes all the desire to eat, and it is a recipe that makes it extremely difficult for any child in that situation to lose weight.
But we stopped the course, doing all we can to get him to transplant weight (16 kilos). By the end of 2016, we knew that 2017 would be the year of transplantation.
My wife and I had decided early that I would be first in line for any donation. And by 2017 the year will finally happen, I needed to get my body ready to not only donate but also bounce back from surgery. While I spent a great deal on the autopilot in 2016, 2017 was time to get back to work.
Using Tech to get in the best shape of my life
On January 1, 2017, I dramatically revised my diet. I once again began using the MFP religiously. I cut away all drinks apart from water and coffee. I wanted my kidneys to be as clean as possible for donation. I monitored my water intake. I took care of myself better than ever before. While I had lost 55 pounds in the past, I feel that my biggest health benefits came in 2017.
I added a power meter to the bike I was at then, which is the most accurate way to track calories burned. Power gauges use voltage gauges to calculate how much power measurement in watts you physically put in the pedals. A watts correspond to a calorie, so you know exactly how much you burn on a certain ride with the greatest accuracy.
But it was just the tip of the iceberg for me. I also downloaded a bike trainer – a tool that allows you to ride indoors – and soon found a program called TrainerRoad to use with it. If I had to choose one thing that helped me reach my fitness goals more than anything else, it would be TrainerRoad.
Here's the indoor bike: it sucks sucks. Being on the bike is one of the best things about cycling, and shades of the road keep things interesting. Inside, you only spin. It's sad, and it's hard to be motivated. Thirty minutes feels like a crazy long hit a coach. But TrainerRoad changed it, at least to me.
It uses structured interval training to help riders get better shape – it helps them get faster. Most TrainerRoad users use it as part of a training plan to be faster for racing, but I had a much bigger goal in mind – I wanted to lose weight and be in the best shape of my life for transplant. TrainerRoad helped me more than just physically.
Six weeks of TrainerRoad showed me in a stronger rider than three years to consistently ride outside. It was mainly because of the physical gains, but there was an element here that I had not expected: the mental change. With TrainerRoad you have to continue when you think you can not. It showed me how deep I could go – how deep my pain hole really is. When I usually had a back injury, TrainerRoad showed me that I could drive and continue far beyond what I had ever expected.
Breaking the mental barrier meant so much more to me than just cycling – it showed me how much I could handle. My son was my motivation, and every time I wanted to back, I thought of him. I thought of everything he had undergone, how hard he struggled every day to be normal. The emotional response to that was all I needed to get through the toughest workouts, and TrainerRoad helped me dig deep to find it. Now I apply that kind of "dig deep" mentality to so many other aspects of my life.
I started using TrainerRoad with a "traditional" coach, but soon upgraded to a smart coach-one that the software could control remotely. This forces me to keep my intervals at the prescribed power; even when I wanted to back, I could not. This drives my fitness to levels that I would never have ever achieved.
I used to get stronger on the bike, get better overall shape and continue to lose weight. I did all this while I underwent the necessary tests to be a donor (and believe me there were so many tests ). I completed the Living Donor Transplant Application on March 3, 2017. I began compatibility testing on April 13th.
On August 22, I was approved to be his donor.
On October 9, 2017, I walked through the Southwestern Southwestern Southwestern Dallas, TX at a sore 136 pounds-74 pounds lighter than my starting weight in 2013 and 29 pounds from the beginning of 2017-to donate a kid to my then five-year-old son . This is our day after the transplant, October 10, 2017.
This was the top of my existence; The highest point I've ever been and probably will ever be. And I could not have done it without technology.
Funny Fact: They removed my kidney at UT Southwestern in Dallas, but did the transplant of my son at Children's Medical Center about a mile on the way. There were two surgeons, one who worked on me and one on him. My surgery started about an hour before him, and both surgery physicians were in constant contact with each other. When my surgeon stopped the removal of my kidney he premade. When my kidney was out, my surgeon went to the children's hospital for the last kidney connections in my son!
Since the transplant we have both done exceptionally well. The doctors and surgeons said his recovery would be much faster than mine – his body won something as it was missing and needed, while the mine lost something as it always had.