With full honesty I will admit that I am reluctant to share my story as I’d rather people know me for my other characteristics and achievements instead of the health issues I’ve faced. However, I don’t currently have that luxury as I’m in the position of requiring a selfless donation from a living or deceased individual in order to continue to live a life I want to live. I will be as brief as I can below and plan on writing this with more of an informal tone than a professional one to make the process easier on myself and seem less robotic. After all, despite how many “not a robot” tests the internet has thrown at me I’ve never once been deemed a robot and don’t plan on starting today.

Around the age of two I was diagnosed with a rare kidney disease called Alport Syndrome. Alports (The possessive “s” gets added because of the midwestern habit of adding it to everything. For example: Kroger = Krogers and Meijer = Meijers) is a genetic condition that while complicated can be simply viewed as something that slowly damages the kidneys over time leading to their eventual failure. I have a more detailed version on this site but it is an incurable condition that almost always leads to kidney failure in males.

Almost every health issue I’ve encountered in my life has been from Alport Syndrome as its influence doesn’t stop at the kidneys. It causes hearing loss, eye abnormalities, eyesight issues, and in rare instances leiomyomatosis (tumor growth) in smooth muscle. Despite having experienced all of these additional symptoms, one of the hardest things to digest was the knowledge that one day I would experience kidney failure. When I was young, around 5, I remember being told that this failure would occur before I finished high school and that the only reason it would be that far out was due medication I was taking that somewhat protected the kidneys. This medication, a blood pressure medication called Lisinopril, worked better than they predicted as I didn’t experience end stage kidney disease (ESKD) in high school. In fact, I managed to make it to age 30 before hitting ESKD.

Making it to 30 before experiencing kidney failure is without doubt very fortunate. I was able to complete my undergrad studies, graduate studies, and gain work experience without the added burden of managing kidney failure. I am extremely grateful for those years and for the doctors managing my care and probably a hefty dose of luck that allowed for my kidneys to last this long. However, in late February of 2024 I was told that my kidney function had declined to the point where it was prudent of me to meet with the transplant team and have my name added to the transplant list.

The following months have had a gauntlet of doctors appointments where I’ve met with different nephrologists, been assessed for dialysis, traveled to the Mayo Clinic in Minnesota for a consult, and have been evaluated by the transplant team. As of today, while my kidneys are operating at 12 percent and toxins in the blood have built up, I have been able to weather the decrease in kidney function without needing dialysis. This weathering though is nearing its end based on symptoms and the trajectory of my lab results from my regular blood draw. As of July, 2024 I have been added to the deceased donor list in Michigan.

I am currently attempting to be listed at *the* Ohio State University as well due to their kidney transplant statistics showing a faster turnaround time than University of Michigan’s. This will take a few weeks if not months but I plan on taking advantage of being listed in more places than just Michigan as that could improve my wait time.

I am grateful to have been added to the deceased donor list in Michigan; however, the average wait time for someone on the list to receive a kidney is 5 years. Five years is a hell of a long time to wait with kidneys functioning at 12 percent that will continue to decline. Dialysis will be an eventuality within those 5 years and while dialysis will help with filtering toxins it is not a viable long term solution due to its risks and inability to function with the efficiency of a kidney.

The long term solution is to receive a kidney either from a deceased or living donor. Both these types of donations can last a long time (10+ years); but, living donations typically have the better outcome and last longer than deceased donations. Some living donor kidneys can last 30+ years!

It is my hope that by sharing this story, I may find a living donor. However, this is an incredibly lofty goal and requires an obscene amount of generosity. Therefore, at the very least, I wish to inspire EVERYONE to check their driver’s license to ensure they are organ donors. There is no reason to not be a deceased donor; after all, its not as though you will be using those organs at that time.

Thank you for reading all of this. If you have additional questions that aren’t answered by the other pages on this website please feel free to reach out and I will do my best to respond in a timely manner.

[Updated 10/18/2024 to reflect worsening kidney function and being listed by the transplant team at University of Michigan]