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Kevin‘s Story

Originally published August 2014 and updated January 2023. Kevin currently works full-time for ASF.

My name is Kevin. I’m 36-years-old and live in Nesconset, New York. Up until July 2012, I had no outstanding medical issues and had never been to a hospital except to visit others…not so much as one broken bone, or one chipped tooth. Luck of the Irish I guess. Everything changed when I began feeling extremely tired. I would return from work at 5 p.m., be in bed by 7 and wake up the next morning feeling more exhausted than before. I began to feel nauseous after some of my favorite meals. I had zero concentration at work. On July 12, 2012 I awoke with a ringing in my left ear and an ache in my sides. After a quick visit to the doctor for what I believed to be an ear infection, I found myself in the ER at a local hospital.

My blood pressure had spiked to 240/120 and my potassium level was dangerously high. I endured two kidney biopsies, EKG’s, sonograms…every test you can imagine. Doctors performed hemodialysis immediately via a groin catheter and subsequently, a chest catheter. After 26 years my kidneys had failed because of a rare disease called Alport syndrome. My first reaction was “What the heck is Alport syndrome?“ Most of my friends gave me the same quizzical look I gave to my doctors. Then after quickly reviewing my options, I chose to have surgery to prepare me for peritoneal dialysis.

Fast forward. I performed Peritoneal Dialysis (PD) for close to two years. I was attached to a life-saving machine for ten hours every evening, every day of the week. I followed a strict diet and took seven pills (binders) with every meal.

I actively sought a living donor. I networked extensively and had my story featured both locally and nationally (News 12, Newsday, Yahoo home page, Bing home page and USA Today to name a few). Some individuals were tested and failed. Some offered to help and then backed out when it counted. On May 6th, 2014 my best friend, Matthew (pictured above), selflessly donated his kidney to me giving me the gift of life. There are no words to describe the enormity and impact of Matthew’s decision.

Thankfully, I never let dialysis slow me down. I took part in two 5k races during my dialysis days (one of which was the incredible National Kidney Foundation walk over the Brooklyn Bridge). I continued working part-time for a local radio station. I exercised and still exercise daily. I frequently made trips into NYC to see friends and take in a concert or sporting event. NOTHING slowed me down. I brought my dialysis machine with me on road trips and even did treatment in hotel rooms.

Since being diagnosed, I have been very active in advocating for living organ donation. I raised over $2,000 for the Alport syndrome Foundation in 2013 and networked with other younger dialysis patients to mentor them. As of January 2023, I currently serve as ASF’s Associate Director.

Please consider signing up to be an organ donor.

Stay positive. Stay lucky. Stay healthy.