Dylan’s Story
I am a 34-year-old father of two young children living with IgA Nephropathy. IgAN is an autoimmune disorder that is also known as Berger’s Disease. This disease affects everyone differently. Some patients can have it for years with no symptoms. Others have a mild case and can live a normal life with it. I happen to have an aggressive form that is stubborn when it comes to treatment. It causes my body to produce antibodies that fight my own kidneys.
I will never forget the day in early 2017 when my doctor told me that my kidneys were failing due to IgAN and I would need a transplant or dialysis to live. At that moment it felt like life stopped, but life keeps going and every minute since then my kidneys have deteriorated. I was prescribed medications to keep my kidney function stable. By September 2017 my Nephrologist informed me that my bloodwork indicated my kidney function had dropped to 39%. I sought a second opinion from a doctor at Columbia in NYC and he confirmed that I had the most aggressive form of the disease. In early 2018 my kidney function dropped to 20% which is the government target number to be eligible for a transplant. We started our campaign to find a living donor since the waiting list for a cadaver was 8-10 years.
I received my first transplanted kidney in Feb 2019 and was able to keep the auto-immune disease at bay for 3 years. In December 2021 I contracted the flu which put me out of commission for close to 2 weeks. After that my lab results indicated that IgAN was slowly affecting my kidney function once again. Throughout 2022 my lab results showed a gradual drop in function. In 2023 the disease was relentless, and my kidney function declined to the point of being back on the transplant list.
During this time, I continued to be involved in all aspects of a busy life with Cayden (10) and Addison (4). I have successfully completed an electrical apprenticeship for IBEW Local 488 and have been gainfully employed in the industry as a Journeyman Electrician.
