Hello. My name is Daniel Bernstein. I'm 49 years old, a husband to Alysa and father to three teenage boys (Noah 15, Toby 13, and Seth 13). I'm also in End Stage Renal Disease for the second time and looking for a blood type O living donor (my first kidney transplant was 29 years ago). I knew early in my life, that my kidneys would fail. When I was 6, I had a biopsy that identified my kidney disease as x-linked Alport’s Syndrome. Alport’s Syndrome in my family progresses early; my younger brother had a kidney transplant at just 13 through a living donation from my father - that kidney is still functioning over 35 years later. I have two cousins and two aunts who have also had transplants, so I'm quite limited in potential family donors. My wife was successfully treated for breast cancer in early 2021 and cannot act as a kidney donor at this time. I've had other friends or family step forward but for one reason or another, they were not eligible or could not donate. So, right now, as someone with type O blood (universal donor but not universal recipient), I face a very lengthy wait for a kidney, possibly as long as 5 years.
My first kidney transplant began to fail in late 2019. I worry about being there for my kids and wife, and that takes on a special importance for me since my father died in a car accident when I was 19 and still on dialysis before my first transplant (I actually received my transplant on the anniversary of my father's death - makes you wonder). I've been through kidney failure before, my spirits are high, and I know I will get through this, but its tough not having the energy to be there 100% for my kids and wife. The burden has truly fallen on them. Kidney failure comes with a number of complications, including diet restrictions and low red blood cell counts (causing fatigue and reduced physical activity). This really restricts what we can do as a family on an everyday basis. In 2020, I decided not to coach baseball, this past summer I missed my oldest son Noah's 10-day Northern Tier Minnesota canoe trip and this Fall I missed Toby's league championship soccer game. Yet, I dread what may be coming in 2022 when I start dialysis - how will I balance treatments 3 times per week for 3 hours a session (or possibly 5x week 2 hours if I chose home dialysis) with my job that requires travel, and getting my kids to sports and club events.
Life has been tough at times, but this is a story of hope, of perseverance, and how organ donation is truly the gift of life. I graduated from the University of Miami in 1996 (2 1/2 years after receiving my first transplant), received an MBA from the University of Maryland in 2004, and have led a successful career in finance. In 2003, I married my rock, Alysa. I’ve had the pleasure of coaching my kids baseball teams, going Scouting, hiking / camping in national parks (Acadia, Yellowstone, Shenandoah, Smokies, Grand Canyon), and watching their soccer and wrestling matches. I have also played racquetball at a competitive level since I was kid and post transplant I won medals at the US Transplant Games, including several silvers and a gold.
I don't like to ask for help, so this is a tough ask for me, and I'm grateful for the life I've had, but there's still so much I want to see and accomplish. I want to see my kids grow up and I want to grow old with my wife. If you're type O, you can give directly, or if not, you can give as part of a kidney chain (where you give a kidney to someone else and the family member of that recipient would give a kidney to me). Please consider starting the donation process for me or someone else in need, and please forward my story to others who might be inspired to give the gift of life.
If you are considering being a living donor please use links below to contact Daniel Bernstein's Transplant Center. Begin by completing the donor questionnaire
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Medical expenses for living organ donors are 100% covered, and inquires from potential donors are 100% confidential! Contact the Transplant Center to learn more about living donation.
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