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In the summer of 2020, Kam Shenai received life-altering news – he was entering stage 5 kidney failure. The looming prospect of dialysis left him grappling with fear and confusion about what was to come. Little did he know that this challenging period would set the stage for an inspiring advocacy journey and a subsequent kidney transplant that changed his life.
Advocacy Takes Root
Kam's journey into advocacy began with a simple yet powerful essay, "Eighty-Eight Hours," urging fellow patients not to view dialysis as a death sentence but as a gift of life.
“My dialysis treatment began on July 21, 2021. I was scheduled to go three times a week, with each treatment lasting three hours. Several of my friends kept asking me how I was coping with the new normal, with an almost sympathetic tone,” said Kam. “I thought about it, and with some practical experience and introspection, I decided to put my thoughts on paper. The result was my essay ‘Eighty-Eight Hours.’”
This essay focused on Kam’s mathematical model that looked at his hours in a week and hours he would need to do dialysis.
It gained traction, leading to a YouTube interview, and catching the attention of the National Kidney Foundation (NKF). Kam embraced the role of a peer mentor, driven by a mantra to make a difference in at least one life. “I decided I had 88% of my normal active time available to me after considering time spent at the dialysis center.” Kam said, “Eighty-Eight Hours to focus on whatever I enjoy the most: Family time, Community work, learning new things, reading, music, health and wellness, social interactions, watching sports, cooking!”
Facing the Fear of Dialysis
The period between diagnosis and the start of dialysis was marked by uncertainty. Kam vividly recalls the anxious thoughts about the future–holding grandkids, the fear of his wife becoming a widow, and the daunting prospect of being tethered to a chair for hours. Dialysis was, for him, a challenging and emotional rollercoaster.
“Dialysis scared me. Crazy thoughts came to me. Thoughts like, will I be able to hold my grandkids? Would my wife become a widow? Will I be on dialysis for the rest of my life? I was feeling scared, helpless, and hopeless. I was dreading the thought of getting tied to a chair three times a week for three hours each. In other words, I was a mess.”
After writing the essay, Kam realized that you can be productive while going through dialysis.
“I became more positive and hopeful that if I kept my eighty-eight hours productive, I would be able to deal with the situation as I waited for my transplant,” said Kam. “Then I saw the reaction from my fellow patients to the essay and realized it could make a difference. I also concluded that if my advocacy made a difference in one life, my effort would be worth it. So, “making a difference even in one life” became my mantra.”
The Power of Advocacy on Dialysis
Kidney advocacy inspired and energized Kam: “Based on the reaction of the Dialysis Center staff, the patients, and my medical team, I felt encouraged.”
Kam later received an email from his nephrologist who mentioned that they carried his essay in their pocket to show and inspire other patients.
“This was the icing on the cake,” said Kam. “The effort was worth it. I was making a difference.”
Kam's advocacy efforts while on dialysis resonated with patients, healthcare professionals, and even local media. Stories about chronic kidney disease (CKD) were covered by TV stations, from Spectrum 13 to FOX 35, and even Fusion Fest, helping fulfill the goal of raising awareness about CKD. Kam began his advocacy journey with the NKF to inspire others and to make lasting changes on the state and federal level for everyone in the kidney community.
The Transplant Call
On his way to dialysis, Kam received a call that would change his life. Tampa General Hospital informed him that they needed him at the transplant center immediately–they had a kidney for him, defying the expected five-year wait.
“I went into the dialysis center to inform them. The reaction there was extraordinary. I got the biggest hug from the nurse in charge who said, ‘Go, Go, Go Mr. Shenai. We will be cheering for you.’” Kam said, “I called my wife in Germany and both of us cried. We were expecting a wait of five years. I received the call exactly two years, two months, and two days since I started dialysis.”
Kam went home, took a shower, and began crying as he was hit with an emotional whirlwind– joy, relief, and excitement for the future.
“I remembered a famous quote by Charlie Chaplin; ‘I always like walking in the rain so no one can see me crying.’ I stood under the shower and cried to my heart’s content,” said Kam. “My friend picked me up at 8:30 am. I reached Tampa General at 11 am, was in the Operating Room at 6 pm, and when I came out of the recovery room at midnight, I had a new kidney.”
With that, Kam’s life changed for the better.
“It was changed because of an individual who had signed up for his organs to be donated after his passing.” Kam said, “I remain ever grateful to him for allowing me to live.”
Advocating for Legislative Change
Post-transplant, Kam's advocacy took a new direction. As he adapted to the lifestyle changes that came with the transplant, he realized the importance of sharing this knowledge with fellow patients. Engaging, educating, and empowering others to lead a productive life became the core of his evolved advocacy efforts.
Kam draws attention to the stark realities of organ transplantation, emphasizing the need for legislative support. He highlights the Living Donor Protection Act (LDPA), urging legislators to co-sponsor this non-controversial, bipartisan bill that addresses discrimination against living donors and supports their well-being.
Kam's journey from dialysis to transplant serves as a beacon of hope and inspiration. His advocacy efforts, fueled by the desire to make a difference, showcase the transformative power of a positive mindset. As Kam continues to advocate for kidney health, he leaves us with a simple yet profound philosophy – Give Back Plenty. Join the wave and make a difference!
Help make change and find your community. Become a Voices for Kidney Health advocate.
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