I will never forget. On the first day of my trek to Mount Kilimanjaro we took a group picture with the Sherpas at the gate where the trail to the summit starts. I looked down at my swollen legs. “What the heck?!” I murmured. “Perhaps my shoes have been too tight”. My legs were still swollen when we came down from the summit and we popped a bottle of Champagne for our success and my 39th birthday. My legs were still swollen a few months later at the doctor’s office at NY Presbyterian when the doctor delivered the news: “The biopsy revealed that you have an autoimmune disease calledFocal Segmental Glomerulosclerosis (FSGS). As a result, your kidneys are getting scarred. The cause is unknown, but don’t worry we have many ways to attack this. . . we’ll take care of those swollen legs!”
Many ways indeed. After 6 years of fighting the disease, trying everything known to modern medicine, participating in trials and experiments, undergoing diet and naturopath treatments, my kidneys failed and I started dialysis. My legs are no longer swollen.
Many people ask me how my life has been since the disease started. Life with kidney disease can be rather exciting. I became a father of the most awesome boy ever to exist on planet earth. I inherited 3 lovely stepdaughters. I quit my corporate job and started my own business. My wife and I moved to California to explore new frontiers and we bought our first house, remodeled it and made it home.
Life on a dialysis comes with many “Nos” and “Can nots”. I can’t travel as much as I used to, I can’t swim laps in the pool like before, I cannot go to “parts unknown” or hike and camp in the wilderness anymore. I don’t have the energy or the strength I used to have. I am no longer the playmaker and “the engine” of the soccer game. Competing in triathlons is no longer on the schedule. The risk of infection is always with me. Despite all of this I am grateful that I am alive and that I can keep on going.
Life on a dialysis is temporary. One day it will no longer be possible to clean my body from the toxins with dialysis. When will that happen? Only The All Mighty knows. Statistically, the average life expectancy on dialysis is 5-10 years, however, some patients have lived on dialysis longer than that. Unfortunately, the waiting list for a deceased donor kidney is 10 to 12 years. It is not about math but that math is a little scary.
I am still only 45 years old and plan on being with my son, my wife, and my family many more years to come. They need me and I will be there for them. I plan on witnessing my son’s growth, every milestone he achieves, and any wonderment he encounters. I plan on taking them on an RV Trip to New Zealand, to dive with the tiger sharks at Darwin's Arch in the Galapagos, and a foot safari in Zambia to see a real live elephant.
The only thing I need for that is a kidney.
I am very hopeful that I will find a match. I am blood type O+ and unfortunately, the two members of our family with matching blood types O+ are too old to be accepted as donors. My other family members did not qualify to be donors. In general, any blood type kidney can be used either as a match directly (if it is O+) or indirectly (if it is another type through the Switch Paring Program), but they must fulfill certain criteria.
Why donate a kidney to a stranger?
In my mind it is simple; you are giving someone a second chance at life.
Thank you for reading my story.