“You never know how strong your are until being strong is the only choice you have.”-unknown
“You never know how strong your are until being strong is the only choice you have.”-unknown
Hi! I’m Crystal
Well, I guess a good place to start is about the Transplant to Triathlon title of my blog. I am very lucky to have received a liver transplant and 2 kidney transplants. The kidney failure came as quite a shock to me when I went to the emergency room when I was 21 thinking I had a severe cold or flu or something along those lines and found out my kidneys had failed. Looking back maybe I should have known because my younger sister also had kidney failure and very sadly passed away when she was 11 and I was 13. It turned out we both had inherited the same extremely rare genetic disease called Primary Hyperoxaluria. By the time I got severely ill at 21, I thought I was safe from the kidney problems and it was something else. My sister was 2 years old when her kidneys failed and I thought that making it to adulthood I was probably never going to have to deal with it. Maybe it was just hopeful thinking too. I didn’t realize how differently the disease can progress from person to person. As it turned out I was one of the more fortunate ones who did maintain kidney function until adulthood with almost no intervention. Most people with Primary Hyperoxaluria do have major problems as young children.
I was also fortunate that in the 8 years since my sister had passed away, people were actually researching and finding ways to help people like me with this rare disease. At the time my sister’s kidneys failed we were given no hope. At the time I started dialysis I thought the same was true for me. But thankful to those special researchers and doctors, progress had been made with treating Primary Hyperoxaluria by doing a combined kidney and liver transplant. I won’t go into all of the scientific details here but the source of the kidney failure is actually a defective liver. If you happen to be interested in more information on it, an excellent source is the Oxalosis and Hyperoxaluria Foundation website.
I was on dialysis for just over 3 years when I finally got the call to get my lifesaving liver and kidney out at the Mayo Clinic in Rochester, MN. The liver transplant went quite well. The kidney took some time to work because it went into shock during the long surgery which is somewhat common. Usually they will start functioning in a couple of weeks. Mine took over 3 months but I remained positive during that timeframe and was sooo happy when I was finally off of dialysis. I did experience one more complication when I got a virus called BK or Polyoma that attacked my kidney and brought my kidney function down low enough to where the hospital put me back on the transplant list because they didn’t no how long the function would be good enough to keep me off of dialysis.
Once again, things worked out and the kidney function did last for another 4 years until I met my totally wonderful husband and he gave me his kidney in 2008. I’m happy to say, other than a short bout with the same virus that attacked the first kidney, it has been working well since. It’s been a long road back to full health but I consider myself extremely healthy for the past couple of years and that’s where the second part of Blog name comes from. I trained for and completed my first triathlon in 2013 and am looking to jump up to the Olympic distance triathlon this year.
Triathlon, running, fitness for that matter is not something that comes easily to me at all. I was a fat kid. I weighed 276 pounds by the time I was 14 (funny how certain weight numbers stick in your head when you were an overweight kid and very conscious of it). When I found out about the kidney failure I weighed 303 pounds. Hitting that 300 pound mark was definitely a trigger for me, as it has been for many people. But the other trigger, and one more piece of evidence for me that everything happens for a reason, was the kidney failure. Knowing that my sister had passed away from the Hyperoxaluria in a very slow and painful way and thinking I would suffer the same fate, the decision to start dialysis was quite a difficult one. Fortunately I had an extremely compassionate nurse when they admitted me to the ICU with the kidney failure who convinced me that maybe there was hope and that I should at least give myself a chance at getting better. So, in choosing to go on dialysis that day, I had made the active choice that my life was worth fighting for and knew I had the strength to fight for it. And if I was going to fight for my life, I was going to be fighting for as awesome of one as I could have. That desire for an awesome life led me on the long road of weight loss and seeking a fitter and healthier life that today has led me to the world of triathlon.
