I have a disease. I don’t like the way those words sound. So, I don’t speak of it often. In fact, many days I ignore it. Even when my body is screaming loud with signs and symptoms.
It’s been 10 years since I was diagnosed. Adult onset, they call it. I was more than a full-time student in college, working 2 jobs in 2 different states, and starting to fall head-over-heels for my tall, dark, and handsome. And I mean, falling fast. So much, that I took every opportunity available to travel from Mississippi to Ohio to be together.
One trip was unforgettable. He made it a trip that I’d always remember, but so did PKD. It was jam-packed with adventure! From broadway and a riverboat cruise to horseback riding and a Cleveland Indians baseball game, we made the most of every minute together! Perhaps, where our love of travel and exploring new cities began.
Somewhere in the midst of fancy and fun, PKD interrupted. Knives stabbing me in the back. Fever. Vomiting. Barely able to walk, practically crawling up the stadium ramp to the baseball game. Forcing myself to ignore the symptoms long enough and finally succumbing to the pain, I found myself in the floor of a hotel bathroom in the fetal position crying out for help. For answers. For relief.
The flight back home was nothing shy of an adventure itself. From three unexpected gate changes in Atlanta airport (need I say more?) to a delayed flight to walking outside and climbing the air stairs to board the plane, I was certain the torture was some sort of payback for the fits I’d given my parents as a child.
But that’s not all. Due to bad weather the turbulence made the flight more like a roller coaster ride and took longer than expected. I tried to keep my composure but when I’d had all I could take, I pulled out the tray-table in front of me where I buried my face in my arms and began to sob uncontrollably. The gentleman seated next to me, tapped me on the shoulder multiple times asking if I were alright and if he could help in someway. Unable to talk through the pain and give a verbal response, each time I shook my head ‘no’ with my face still buried in the tray-table.
Ever so slowly approaching my destination, my mom found herself face-to-face with airport security when she couldn’t get an explanation for the flight delay that was transporting her precious and very sick cargo.
I landed myself in a hospital room for an extended stay where pain medicine kept me comfortable and the tests provided a life-changing diagnosis. There was a severe infection, stones, along with hundreds of cysts covering my very enlarged kidneys. No explanation other than genetics. No treatment. No cure.
I was released. Then, went home and sat behind a computer screen and a search engine that sentenced me to a shortened life ending in kidney failure with dialysis and a spot on a transplant list as the only options to prolong it.
It’s been a decade since I married that tall, dark, and handsome man who is still taking me on adventures and keeping our life together a constant surprise! We’ve been blessed with three beautiful and healthy children. We’re living the American Dream together. It’s truly a wonderful life that we live.
I turned 30 this year. It was a tough birthday. But not for the typical reasons. I had thoughts that normal people don’t have until age 40. Am I already over the hill? Is it possible that I’ve already lived half my life? Or more? I didn’t want to think those thoughts but it’s reality. It’s a life with Stage 2 PKD.