My Story

Hey Everyone, It’s Mike here.

I’ve got something to tell you that is not easy for me to share. For some of you, it will be the first you’ve heard about it. Some of you know a little already.

So, here goes …

The Situation

About 1 year ago, I had my annual physical, which included blood work. As a diabetic, I’ve always kept a close watch on my health and fitness level. The following day, my doctor phoned with news I never expected to hear: I was in Stage 4 kidney failure! I’d been feeling nauseated and weak, but with no history of renal problems, I never imagined I needed a kidney transplant! Since that day, my family’s world has been turned upside down . . . so many questions, worries, fears, emotions.

Thankfully, I have my best friend of 35 years . . . my partner, Simonetta, by my side. I also have a grown son, Jesse; two stepsons Christopher and Bryan; and 2 adorable grandchildren, 24-year-old Alexis and 7-year-old Kieran. We also have two spoiled dogs named Zeena and Feebe. My family means everything to me.

Simonetta and I were astounded. How could this plunge into the final stage of kidney failure have happened so suddenly? My doctor believes it may be related to diabetes, or possibly something I was exposed to, but no one knows for sure. 

Now my kidneys are functioning at 18% of normal capacity. I’ve lost 30 pounds in the past year, and I’m extremely fatigued daily. I’m experiencing pain in my joints due to my body’s lack of protein. Even food and drink don’t taste right (a common effect of kidney disease). Kidney failure is quickly taking its toll on me.

A bit more about me:

After serving in the US Navy 1973-79, I began a career as a General Motors auto technician. Later, I received my undergraduate degree in Physics, from State University of NY at Stony Brook. This led me to a position at a particle accelerator laboratory at Cornell, where I have worked for the past 31 years designing, doing research, building new equipment, and working with scientists from around the world with their experiments in Synchrotron Radiation.

In my spare time, I’m paddling on Cayuga lake, racing in whitewater open canoe slalom events, in the ocean with outrigger canoes, and annually participating in the national championships. Since 1990, I have won 13 gold medals in the National Championships, including one just last year in the tandem canoe class with my son, Jesse. Also, as a coach for the Cayuga Outrigger Club in Ithaca NY, I introduce new people to the sport and teach them advanced paddling techniques. 

If my kidneys decline any further, I will need dialysis – something I want to avoid as much as possible. Transplant recipients who do not go on dialysis prior to their operation report both better short- and long-term health outcomes. As you can imagine, I’m scared. Once this catheter is in place I will no longer be able to be exposed to unchlorinated water, thus the end of my ability to coach, race, and play in my most beloved activities.

Due to various health issues, no one in my family is able to donate to me. A few close friends have volunteered, but sadly, they were found to be ineligible. So, I must turn to you for help. You do not have to be a blood type match for me specifically – because my hospital participates in paired donation, a person of any blood type may donate. 

I am currently registered and active on the United Network for Organ Sharing (UNOS) list along with over 100,000 other hopeful kidney transplant recipients. The waiting list for the Central NY region is 6 – 8 years. Even if I could last that long, I would most certainly be on dialysis for years prior to a transplant, and a deceased donor kidney does not last as long and can present extra complications. Therefore, a kidney from a living donor is considered my best option.

Now, by far the hardest part of all of this is that I have to rely on someone giving one of their kidneys to me. I mean, how do you even begin to ask someone for a gift like that? I don’t even know where to begin or how to ask, so I am just putting it out there into the universe. In order to continue living, someone needs to graciously offer to donate one of their kidneys to me.

How can you help?

I would imagine this is something you have never thought of doing. I know it is a big ask, and it is okay to say no. I don’t want anyone to feel pressured, or to feel guilty in any way about this request.

However, I do need everyone’s help.

I need you to become my ambassadors and help me get the word out. I need you to help me find the person who feels called to donate a kidney, and sees this as the right choice for them to make. I do believe they are out there, and I believe we are going to find each other.

In the meantime, I would like everyone to please visit the National Kidney Foundation’s page on kidney transplantation at kidney.org and read up on what it takes to be a living donor. Those interested in applying to be my donor should visit the page “How You Can Help” to get started.

Perhaps being a living donor is not right for you right now. That’s ok. Consider being a deceased donor. Visit the Health Resources and Services Administration’s page organdonor.gov to register and learn more. 

Before I started this journey, I had no idea what a tremendous need there was for organ donors, living and deceased, and I’ve learned a lot in the process that I knew nothing about before. For example, through the Kidney Paired Donation program, people who are not a direct match can be paired with another pair instead of donating directly to each other. There are also several factors that make someone a match, so don’t rule yourself out too quickly just because of your blood type! 

I hope that by me being honest with you about my situation, you will feel compelled to help others who are going through the same thing.

Staying Kidney Strong

Thank you for taking the time to read this to the end. You can’t imagine how hard this has been for me to make such a big ask, especially from people whom I love. It has been quite a humbling experience, but I am very grateful to have such great support by my side, and am inspired to give back to others with kidney disease, even while I am still on my own journey figuring all this out as I go.

Please, no pity or sympathy. I am a very lucky guy. Other than this kidney drama, I am doing great! I’m spending my life with the woman I love. I have an amazing family, get to paddle nearly every day on one of the most gorgeous lakes in CNY, and I have two absolutely adorable dogs.

Send me a dirty joke. Send me a funny pic. But please, nothing sad. This is going to work out. We just have to find a kidney for me.

Please keep me in your thoughts and prayers.

Many thanks,
Mike