It’s Day Zero! We wanted to introduce you to a new face on the 2015 Kidney March Team you’ll be seeing this weekend, Brynn. She is our AMAZING 2015 summer student who has been working hard all summer for the best weekend of the year, Kidney March. Brynn shares with us why working as part of Kidney March is so important to her and her connection to kidney disease.
For 22 years my Grandfather was on at-home dialysis while my Grandmother lovingly took care of him. Twelve or so years ago my Uncle had a kidney donated to him by a coworker. Three years ago this past June marks the date of my Father’s successful transplant. And six years ago, I too was diagnosed with Polycystic Kidney Disease.
The way this disease seems to affect my family, focuses on onset at a later age. For example, my kidneys look like the surface of a Sunday afternoon bubble bath under an ultrasound with all the cysts covering them, however their function is currently, miraculously fine. The same goes for my Father who was diagnosed at 21 years of age, and who didn’t really have to worry about watching the number of bananas he’d put in his smoothies until his mid to late forties.
Four years ago we really started to notice when things got worse and his kidneys started to fail. One month he would be working 12 hour days and going for long bike rides or jogs with me on the weekend, and the next he could only manage two hours of work before he had to leave his shop and come up for a nap. His kidneys were nearing less than 6% function and the amount of toxins in his blood made it extremely difficult for him to find the energy to do many things he would have previously done with ease. It was hard to see my vibrant, fun-loving, and gentle father slowly wither away. Even the classic ‘dad jokes’ were far and few between.
Eventually, while waiting for news of a transplant, he began dialysis. It wasn’t more than three times a week for four hours each time, but it was a schedule that was new to our family life, and something we all had to get used to. Despite the incredible support shown through a number of friends and family members who had stepped forward over the months to be tested as potential donors, including The Kidney March’s very own Marianne Janz (otherwise known as my wonderful Aunt), a direct match had yet to be found.
Six weeks after he began dialysis, my mother, who had initially been the first in line to get tested, decided to enter the paired exchange in hopes that it would give my dad a better chance at a kidney. With the paired exchange, two people enter in as partners, but do not have to be a match. One partner is a donor, and the other a receiver, paired together with other partners to create a large chain of transplants that fit people together like puzzle pieces. It is amazing technology, though can be incredibly unreliable if one person, for any reason, backs out at the last minute and breaks down the whole chain. After one potential chain ended up falling apart, another was built, and on June 20th 2012, both my parents went into surgery while my brothers and I waited nervously.
To say that the surgery was a success is an understatement. I was the first to visit him in the recovery room afterwards and once I saw that (still drugged up) grin coming out from under his beard, I knew my dad was back. To this day he still constantly jokes with my brothers that now that he has three kidneys, no one can ‘take him.’ Though turns it around just as quickly if he’s losing the wrestling match in an effort to ‘please save his one good kidney.’ The fun never stops.
Seeing the incredible support that my family and especially my parents have had for each other has not made me nervous about my future in the least. Research is expanding, technology is growing, and my older brother is a match with two healthy toxin-filters that he has already promised me one of for when the time comes. (Thanks Ben).
On top of this, I’ve had the pleasure of working as a part of The Kidney March family for what has been a most incredible summer. Through this opportunity I have met and am still meeting many amazingly inspirational people with stories of their own, each as unique and differentiated as the disease we walk for. Never have I ever had such a close, personal connection to the work I’ve done, nor felt so much like I was actually helping in making a difference. Thank you to The Kidney Foundation for all you’ve done for my family, thank you to The Kidney March for being my home away from home, and thank you to the people who are all walking together for one reason or another; we’re doing it together, in the same direction. ~Brynn