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I found out that I had Polycystic Kidney Disease (PKD) in my mid 30’s after my Jeep was involved in a rollover accident. The doctor had given me an X-ray and said I had an issue that was likely my kidneys. He shared that they looked larger than normal, but he was not clear what exactly it was from at that point. I could feel that my kidneys were a bit swollen and I believed I suffered the same fate as my father (as he also had PKD). His Nephrologist later confirmed it.
Having PKD has made simple things that others may take for granted in the normal day difficult. From sleeping, to eating, to my energy levels, to dating, to giving someone a hug – my big dumb kidneys continuously get in the way. We made light of this in the YouTube video “A Day in the Life with Big Dumb Kidneys” to share with others a bit of what life with PKD is like. Watch here
My biggest fear living with kidney failure, frankly is being forced into dialysis and living the life my dad lived at the end of his life while he had kidney failure. Most people have no idea what dialysis is or how it affects the body. Though it kept my father alive, it really took away his quality of life. He was very limited on fluids and water, limited on foods and intake, strapped to a machine 4 days a week for 4-5 hours a day and it made him completely exhausted.
Dialysis would end my ability to work and be a productive part of society. It would greatly affect travel and getting to see family. Your life pretty much revolves around getting your next round of dialysis. So that is my biggest fear – I do not believe I want to live that life.
Since my father’s passing, I went to a PKD event with my sister and we met people that had one or two kidney transplants – and even met one person who had three transplants from living donors. It was very inspiring and liberating to know that I might have a chance to not go down the same path as my father with dialysis. That is my hope and prayer.
While it is a life-saving treatment and helpful for many, I watched my father (who also had PKD) on dialysis before he passed away. It kept his body working, but it didn’t keep him alive. I would like people to understand that life on dialysis is not fun or something anyone wants to do. Yes, many do alright for years and have adapted to a lifestyle that is the best they can do under the situation, but given the option most would choose a kidney over dialysis.
I’m typically a positive person, and even when in very tough situations, I take the upbeat approach. Typically, I set my expectations relatively low so I am not disappointed and I go into everything with an open mind thinking that nothing is impossible if I put my mind and effort into it. I have been very lucky to have family and friends that care for me and are very supportive in my efforts. This has enabled me to stay positive and keep the faith. Lastly, speaking of faith, I believe it is important to believe in healing, hope and God. Hope, love and kindness are all the good things that God has instilled in us if we believe in him and keep the faith.
I watch Joel Osteen frequently as my mom turned me onto watching his show and we would watch together while she was alive. So the saying goes like this, “Average people have average problems, extraordinary people have extraordinary problems. Trouble will not defeat me, it will take me to my destiny. I am anointed in trouble with the grace and strength to make it through.”
Relationships are difficult for me, but I try to keep my personal health situation a positive mental one not a negative one. Keeping a positive outlook and my faith fuels my willingness to reach out to others inflicted with kidney disease, help them on their path to find living donors and create overall awareness around living donation.
To reach out to see if you can help Gene, click here
Name: Gene Okun
Email Address: email@example.com
Location: Newport Beach, CA
Date of Birth: February 1965
Donor Blood Type Needed: O - A Paired Exchange is an option. Meaning if you are willing to donate to someone other than Gene if you aren't a match. Essentially you would be helping two people by being a living kidney donor for Gene. Your kidney would go to someone in need who is a match and Gene would get his donor kidney match.
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