09 Aug Kyle‘s Story
When I moved to Seattle, Washington, I was absolutely floored that I nailed an interview at a law firm as their office manager. My previous job had been as a manager at Petsmart so this new position was a great gig for somebody 25 years of age. My experience at the law firm was very similar to Anne Hathaway in Devil Wears Prada. I would run errands and do anything my bosses wanted. I enjoyed every minute.
Five months later I was feeling stressed and worn out. My new job at this Intellectual Law Firm had been pretty taxing. After a hectic morning, I had a doctor‘s appointment scheduled for the afternoon and then plans to hang out with an enjoyable couple I just met, who offered to show me the bars of Downtown Seattle — like a Seattle initiation really.
At the doctor‘s office later, I began discussing with the nurse my health troubles as of late, one specifically being my anxiety over my job and lack of sleep. I had also noticed that I was becoming increasingly disoriented, making silly mistakes at work and constantly feeling fatigued. Immediately upon arrival the doctor requested a urine, blood culture. I was in and out in no time.
At about 8:30pm I had just made my walk to my friend‘s apartment. I was immediately greeted with an alcoholic beverage as they gave me a run down on tonight‘s festivities. I pursed my lips on the straw and fixed my hair in the mirror, without them noticing. Excitement overwhelmed me as I have been such a hermit since my move.
Suddenly, my phone began to ring. Out of courtesy towards my new friends, I disregarded the phone call. Moments later, I notice a voicemail left by my doctor‘s office. Why would they be calling me so late on a Friday night?
My two friends describe the next few minutes as watching someone‘s heart crack. The petite nurse from earlier had just given me a call. My hands grew clammy and face flushed. Her voicemail seems urgent and I immediately ran outside to call her back. “Kyle, this is Nurse Jane Doe from earlier. It‘s very important that we see you first thing on Monday morning. We have scheduled an 8am check in time,“ she explains. Questions spill out of my mouth. “Can you give me a hint?“ I pleaded. She remained professional and we agreed on Monday morning. Such an event had ruined my Friday night. My mind raced with thoughts like “Is it cancer?“ I quietly wept.
Monday arrived fast. The walk through the hallway at the doctor‘s office was quiet, as if I was being ushered to my prison cell. This is when the rug was pulled out from under me.
“Kyle, we have a reason to believe that you have kidney disease. Without a kidney biopsy, we won‘t know for sure. But we found traces of creatinine in your urine,“ he explained. I could see the sympathy in his eyes as I fought back tears.
The day was June 6, 2008 and I was diagnosed with Alports Syndrome. A genetic disorder characterized by end stage renal failure which includes hearing loss and can affect the eyes. The only treatment for patients is kidney dialysis and the benefit of a kidney transplant, although this can cause problems. The body may reject the new kidney as it contains normal type IV collagen, which may be recognized as foreign by the immune system.
This would be the end and start of a new adventure.
After my diagnostic and hospital stay, I moved back to my small city of Spokane, where I could be around loved ones. I kept wondering, “What happens now?“
March 6, 2014,marks my four year Anniversary on Kidney Dialysis. The first couple years were a breeze as my body had little to no side effects, but as time has gone by, my anatomy has become a matter of contention. I no longer produce much urine. My sex drive and relationships have suffered. Light housework has become tiresome. And the worst is losing my hearing after 3 years in. I became Gene Wilder from See No Evil, Hear No Evil. It was a lot to take in.
Through a fundraiser about a year ago I received hearing aids. You would be so surprised by the noises we take for granted, such as hearing my car blinker for the first time or when soft rain hit my coat. I even found out I shuffle my feet terribly. So overwhelmingly beautiful, that I can‘t thank my community enough for giving me my hearing back.
But you learn to adapt with these challenging forces. The one thing I promised myself was I‘d never be negative when it came to my disease. Although I have my days, I keep smiling on. I have seen so many patients with defeat in their eyes. You have to fight on and never lose that sense of oneself. I know that there is a giftwrapped kidney awaiting for me. And with that thought, it keeps me positive for my future. It makes me the Karate Kid of Alports Syndrome. And with confidence and my huge smile, I can say this to you. “This will be my year!“
PS: To read more about my story and status. Visit www.facebook.com/kidneykyle