By Wayne Cook
In 1966 when I was five, I spent over a month in the hospital after having my tonsils removed. I was diagnosed with severe factor IX hemophilia.
I remember being in the room when the doctor told my mother the outcome of the tests and the prognosis of my life expectancy. She was told I would be lucky if I lived to see the age of 20. Well, here I am at 61 and going strong! I wish that doctor was still around so I could show him I’m a survivor!
I grew up in a very rural county in upstate New York where we weren’t afforded the education or the treatment options available for people with hemophilia. When I got hurt, I was taken to the hospital, and I received doses of fresh frozen plasma and spent lots of time there healing. I’m not sure my parents fully understood hemophilia or if they had just decided they wanted me to live a regular, albeit shortened, life. Despite the problems, my parents let me live a typical life. I did things all kids did and played just like everyone else.
As I grew older, I started to learn how serious my hemophilia was. I sought education, learned a lot, and began to get involved in the hemophilia community. I learned how to advocate for myself and how to become an advocate for others with hemophilia too. As the years went by, I realized how badly bleeding episodes had affected my joints. At only 28, I had my right knee replaced. At thirty, my left knee was replaced.
Although I contracted hepatitis C through tainted clotting factor, by some miracle I was lucky enough to not contract HIV.
However, along with depression, I have experienced plenty of other health challenges through the years: at 38, I suffered my first heart attack and spent two weeks in the hospital and eight weeks out of work. There wasn’t a family history of heart disease, so it was surprising. It was also difficult for the doctors to work out how to use blood thinners for my heart while treating my hemophilia.
At 45 and 46, I had each of my knees replaced for the second time. Around this same time, I also went through countless treatments for hepatitis C. It almost took my life due to the toxicity of the treatment, but finally I was able to beat the virus. Unfortunately, at 50, I suffered two more heart attacks, and at 55, I developed diabetes. Then at 60, I was diagnosed with cirrhosis of the liver developing from the hepatitis C. I took a week to pity myself and then, like always, put my foot down and said, “This isn’t going to beat me either!”
I was so excited for my 60th birthday because I was now officially in our community’s “elite survivor’s” club. Now at sixty-one, I feel my age some days, but for the most part, I am in a spot in my life where I feel healthy and happy. I look at life differently now as I know my clock is ticking faster and faster. No day is taken for granted no matter what might be thrown at me. When something stresses me, I take time out to relax and turn off the outside world.
Even though I am still dealing with liver disease and other health issues, I have been off antidepressants for over a year. My wife and I moved to a warmer climate and closer to where we always wanted to be—the beach. We love our new home and yes, even though the summers are hot, it makes me feel so much better! I am outside all the time enjoying working in my yard, playing golf three days a week, or at the beach. I have learned to stop asking “Why me?” and start asking “Why not me?” I have learned to put myself first and started taking better care of myself and my own wellbeing.
Life is much too short to take anything for granted. I have never let hemophilia or any other health issue be my life sentence. I have many more years left to enjoy, not only with my children and grandchildren, but to spend quality time with the love of my life, my beautiful wife, Kelly. We have too many things left to do, places to see, experiences to have, and life to enjoy.
Through all the good times and bad, ups and downs, and pain and suffering that I’ve had in my life, I have to say—it’s been a pretty darn good life, and I wouldn’t change it for one minute!
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