PKD Connection Blog

Awareness, Voices of PKD

Voices of PKD: Gene Okun

Meet Gene Okun! Gene has PKD, and so did his father. Since his diagnosis, Gene’s kidneys have grown big (doctors say they may be the world’s largest) and dumb (functioning at only 18 percent). Currently in search of a living donor, Gene is passionate about educating others about PKD and raising awareness on the importance of finding treatments and a cure. We recently sat down with Gene to hear more of his story:

PKD Foundation (PKDF): What is your relationship to PKD?
Gene: My father struggled with PKD and my sister Tina and I had to watch his health deteriorate under the daily strain of dialysis. Dad was informed that dialysis was likely his only option, and that simply wasn’t true. I am determined, with the support of my sister, family and so many others, to find a living donor who I can call my hero. I have more life to live, and many great things left to do.

PKDF: What has been your experience with PKD?
Gene: I was in my early 30s when I was diagnosed with PKD. I had spent many years earlier in life getting stronger and bigger as a power lifter and body builder – unfortunately, I can’t say growing bigger kidneys was on my list of dream accomplishments. Speaking of big, my kidneys might just be the biggest doctors have ever seen in a PKD patient. I haven’t had a kidney transplant yet, and if I don’t find a living donor soon, I will have to go on dialysis, which I would rather avoid. I ultimately want to live a life that honors my father.

PKDF: What have been the biggest challenges in living with PKD?
Gene: I have had many challenges living a normal, functional, independent life due to PKD. I love seeing my family, being active, traveling and running my company that provides sustainable renewable energy. The disease limits me physically to a major extent, affecting all aspects of my life, including exercise, personal relationships, work and day-to-day functionality. These are all things we take for granted when we are in good health.

PKDF: What would you like other people to know about PKD?
Gene: Kidney issues are not to be taken lightly. When my dad was struggling through PKD and on dialysis, he had to be wary of how much water he drank and the types and amounts of food he ate. For years, he had to endure the long days and confines of a dialysis chair. It’s a truly debilitating disease, which is why we need to work hard at raising awareness and finding treatments and a cure.

PKDF: How do you plan to bring awareness to this disease?
Gene: With the help and support of my sister, family and others, I am launching BigDumbKidneys.com. This site has been developed not only to spotlight my specific situation and search for a living kidney donor, but also to raise awareness, inform others about PKD and let those living with PKD know that they are not alone. Life is about helping one another, and I intend to use my experience to help others who also are fighting PKD and waiting for a donor. There is hope for those who need a living kidney donor. The challenge is that many people do not know where to start. We developed the site so that others can see what we have done to bring awareness to PKD and the success of those that have received a kidney along with the amazing stories of their living donors, the “Heroes” that have unselfishly decided to save another’s life.

For more of Gene’s story, visit bigdumbkidneys.com or follow along on Facebook and Instagram @BigDumbKidneys.

Comments

  1. maureen gardner says:

    Thanks for sharing your amazing story Gene! Stay strong and I will pray that you find a donor soon!

  2. Jaime Seward says:

    Hello Gene. I had a living donor transplant in 2011. A lady from my community volunteered to be put on the paired exchange program. She ended up giving a kidney to a man in Alberta and I received one from a man in Halifax. There were two other teams part of the exchange. My kidneys were both removed. The first to make room ( they were about eight Lbs each) and the second six months later. The new kidney works fabulously. My gratefulness is life changing. Sadly, the cysts in my liver have grown to the point where now I need a liver transplant. I have a tall small frame (I was a model) with a huge belly. The pain, pressure, and health issues this causes is debilitating. Inspite of all this, I continue to have faith because as with the kidney, I saw the beauty of unconditional love from complete strangers. That changed my life and has me content with what ever the Universe/God has in store for me. As an artist, Grand Mother, and nature lover, I would like to hang around for a while longer. 🙂

  3. Gene – we thank you for all the work you are doing to get the word out not only about your own situation and need for a donor, but for all the others out there who are somewhat hesitant to share their story and get there “forever” kidney. You are a great addition to our Saddleback Kidney Support Group and we love your “pay it forward” attitude. We are praying that donor match comes very soon. Blessings to you our friend!

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