My Dad struggled with polycystic kidney disease (PKD), but he didn’t complain. I remember the hot and humid summer in Florida as if it were yesterday. His health had deteriorated. He was not doing well and he was limited to two glasses of water each day. I can still picture the half-filled glass of water and the little sips he took to make it last.
He woke up early each day, still exhausted from his daily grind. But he made a cup of Jamaican Blue coffee for himself and a cup for my mom, the highlight – the greatest joy – of his day. He slowly filled his water glass, being careful not to exceed the limit. I wondered if he was thirsty: if he craved gulping it down, if he wished for just one day where he didn’t have to measure water.
His breakfast was limited by rules, not that he minded. “Food has little to no taste any more, everything tastes like metal,” he told me. He would spend his day at the dialysis center, again, and the daily process to get ready was always the same. First the numbing cream on his arm, then the cellophane wrapping, then his bagel packed for lunch. Right before he left, he always grabbed his blanket, because he always felt chilled to the bones in the dialysis center.
The good (and the bad) of the dialysis center was that he was never alone. Twenty or thirty people also stood in line to get weighed and checked in. They were all waiting in line for the same daily thing – the opportunity to stay alive by being plugged in. The machines hummed, churned and slurped as they did the work that their kidneys could not. It was Goundhog Day for all of them, staying alive only to repeat the same daily process of living in limbo.
Some of them were not candidates for a transplant at all. And this was my Dad’s fate. The connection to the machine was the only way he would stay alive. He sat down in his recliner and held out his arm. For another day he would be grateful for the stinging port that allowed him to live … partially.
My father is very much on my mind as I stand next in line to face the same disease that took him away. Polycystic kidney disease, or PKD, results in kidneys with cysts. These cysts fill with water thereby slowly decreasing the kidney’s function. My challenge is finding a living donor before I have to do the same dialysis my father did before he passed away. Dialysis kept his body working but it didn’t keep him alive.
When I was little, Arnold Schwarzenegger and Lou Ferrigno were my idols. I wanted to be strong like them, I dreamed about being the strongest man in the world. And I got closer and closer. I opened gyms, and training centers. But it was tough on my body. Powerlifting, as a sport, can cause injuries because it pushes the body beyond its limit. So when I developed lower back injuries and a hernia, I had to change my goal.
I decided that I wanted to be the biggest in the world. And, again, I got close. I began my journey into national level bodybuilding. I happened to be one of the largest body builders in Florida. I won awards and the nickname “Mean Gene” by one of my clients, an oxymoron as I considered myself to be the nicest guy around – unless I was your personal trainer!
In my early thirties, I had to change my goal, again. My kidneys had begun to grow as well. I needed to focus on my mind more than my body. I used my degree in electrical engineering to design, develop, finance, and install large commercial, industrial solar systems and large solar farms. I earned another nickname, one that gave me more joy than the one before, “Green Gene.” I am proud of my sustainability efforts that have facilitated huge reductions of greenhouse gases from the earth.
I recently found out from a number of top kidney surgeons that they had not seen kidneys quite as large as mine. In fact, they might be the largest in the world (a title that I never hoped to achieve). My best hope for a normal life is with a kidney from a living donor. But I also know that the line is long. And has been for years. There are people, just like me – and my dad – everywhere.
Now, I have a new goal. I am going to use my kidneys to help others with my same fate. My kidneys are so big, they might as well be a billboard, and they definitely need a job: raising awareness of PKD and the need for living kidney donors.
Profession: Developer of large commercial and industrial solar farms
Formerly: National-level powerlifter and champion bodybuilder
Claim to Fame: Potential record holder for the world’s largest kidneys – we are applying to the Guinness Book of World Records!
Entertainment: Enjoys travel when possible and riding beach cruisers along the California coast
Gene’s only sibling. Wonderful wife and mother of three amazing children: Carly, Ally, and Ryan
Profession: Partner and chief operating officer of a healthcare communications firm that specializes in rare diseases
Claim to Fame: Oversees an amazing matrix of activity that spans her family, colleagues, clients and community
Entertainment: Enjoys travel spending time with her friends and family … and reading a good book when there’s time for it!
When life gets tough, Eugene is there in a moment’s notice. Many years ago, when I fought for life for five hours in an emergency surgery, Eugene stayed by my side. Then he cooked and cared for me until I could function again. I’m always grateful but never surprised by his compassion, because Eugene has always been more than my brother. I consider him to be my best friend.
We recently lost our mother, and I realized it was now just Eugene and I. It became my responsibility to help him manage his inherited disease. Although Eugene protects the people he loves, he often forgets to champion himself, so I knew it was going to be a challenge for him to accept my help. Unfortunately, upon completing the necessary tests to donate a kidney to my brother, the doctors explained that I was not eligible due to previous health conditions. I helped my brother tell our family’s story, knowing that someone out there would save his life so he could continue to serve others.
Eugene is a greatly loved uncle, brother, and friend. He always thinks of others before himself. He listens and advocates for his family and the world. He is the one who calls my kids, out of the blue, just to check in. He is the one who created a renewable energy company to reduce greenhouse gasses for our earth. I want to save my brother not only for me but also for the world: he makes things better.
Our own beloved Dad died prematurely due to complications of a genetic, hereditary disease called polycystic kidney disease, or PKD. He went into renal failure and was not given any other choice but to go on dialysis. We watched him lose his spunk, his humor, his bold laugh. It was replaced by fatigue and hopelessness that lingered until he died.
As I watched my brother prepare to fight for his life, I thought of my dad more than ever. He often told us: “Help others always.” I realize that Gene has given me an opportunity to do just that. Not only did I learn more than I ever wanted to know about PKD, dialysis, and living organ donors, I learned about the tremendous opportunity to make a difference in the lives of thousands of people, just like my dad, who are waiting for a kidney.
Living donors are the best hope and save the lives of people who need kidneys. Gene’s fight has helped me begin to understand the challenge so many people face in trying to find a kidney. It is a confusing journey filled with misunderstanding. I want to change that. I used this website to help Gene, and I want to create a forum and “home” for others just like him to help spread awareness and understanding about what being a living donor means.
I knew that Gene was never going to let me just help him.
I launched this “Big Dumb Kidney” campaign with my sister Tina to find a living kidney donor and raise awareness of polycystic kidney disease (PKD) and other kidney diseases that affect millions of men, women, and children in the U.S. and around the world.
We are grateful to our friends, families, colleagues and business partners who contributed their creativity, energy and skill to make this campaign possible. We especially want to recognize:
- Second Melody
- The O’Hara Project
- David Patiño Photography
- SmartWorld Coffee
- The talented actors who portrayed my kidneys: Big (David Serero) and Dumb (Matt Locker)
- Sara Hayton Makeup
We would also like to thank the dozens of physicians, donors, recipients and leaders of patient organizations who provided input, advice and support on this journey.
Together we can find a living-kidney donor and help others fight kidney disease. Thank you in advance for your blessings and prayers.