PHighter Friday: Kevin

 Kevin, his father David, and representatives from the PHA speak with a representative from Ohio Senator Robert Portman’s office during a PHA event on Capitol Hill

I am a competitive person by nature. I never was the über-athlete, don’t think that, but I did play sports, I did coach sports, and you don’t want to challenge me to a game of Monopoly or Trivial Pursuit. In high school I picked up an oar and took up the sport of rowing, In college I changed gears to play intramural football, and through it all, I played hockey. Even my still occurrent online video games feed a competitive spirit that I thought I would have to lose, and at the time of my PH diagnosis something I was certain was gone and would not be coming back.

3 years after Kevin’s first fainting spell, he takes a picture atop the Williamstown Bridge in Marietta, where he first passed out

I still remember the three months from May to August 2012 like they were a dream, even if it was a bad one. The first cardiologist I had consulted after it became apparent something was wrong, suggested I had at best two months left to live, and suggested my only hope was an immediate heart/lung transplant. I was sent, albeit not immediately, to Ohio State
University’s Wexner Medical Center to confirm his prognosis. From an initial appointment in May with the Ohio State specialist, to an MRI and more tests in July and finally my right heart catheterization and first meeting with my PH Specialist, I was if anything, not my normal self. I had always taken every little thing as a challenge, in my mind if I could mow the lawn three minutes quicker than before, or get to work a minute earlier after leaving at the same time, it was a victory, and for the first time in my life I didn’t see a victory as being possible, and for a period of time, I gave up.

I remember sitting on my couch one day, in the throws of an incredibly horrendous anxiety attack, surrounded by the outdated PH information that most of us can quote by heart, unable to find anyone who could help me in that moment. I remember that moment so well, because my spirit was gone. That little voice in my head that had always told me I could do it a little better, that we could win this was gone. He had simply said “I’m out” and left. I felt I was going to die, I knew I was going to die. The doctors up to this point had still maintained six months or less without medication, and I was not yet on that medication. It was the lowest I have ever felt, and I admit, I just gave in. I succumbed to what some of the doctors had said, what the numbers told me, and I couldn’t find the will to go on.

One of Karen’s famous Christmases would not be complete without, of course, a christmas tree.

I am sure many of the people reading this can relate. Most patients I have talked to can pinpoint the exact moment their hearts sank, that moment that the gravity of their situation finally started pulling at its full strength. It is a moment that I would hope no one ever has to experience, but something that I know far too many of us do. At my deepest and darkest moments I was so helpless that I had trouble doing anything without the urging of my wife or family. I do remember another moment though, when in an attempt to get my mind off of my situation, Karen asked me what I wanted for Christmas. I must preface here, that Christmas is a big deal in our house. Karen celebrates the holidays like no one can. She turns Christmas into a colorful celebration like no one else can. Generally starting the week preceding Thanksgiving, decorations start going up and the tree pops up… a very “Victorian” looking tree in the parlor of our old Victorian-era home. When she asked me what I wanted for Christmas, it was nothing more on her part than an attempt to get my mind off of the situation I was in, but for me, it started this little voice whispering in the back of my head. That voice was telling me to just make it to Christmas. I had to be a part of one more of Karen’s Christmases… and then I could let go.

Armado: a photo from a Shakespeare By The River outdoor production, the first of it’s kind in Marietta. Kevin served to get the production started, as well as taking a role in the production of William Shakespeare’s Love’s Labour’s Lost.

Something amazing happened though, while that little whisper was just urging me on to December. I started medications, and I responded to them. I felt myself getting stronger, I felt a little hope return to me, and when Christmas 2012 rolled around, I made a pact with that little voice in my head. I said that I could make it one better, and Christmas 2013 was my new goal. Without knowing it, and without really trying, that little competitive streak I have in me, came back. Very quickly, I was pushing myself again. Little things at first, to make it a little further on the walk with my wife, or to make it further on my next six minute walk, and new goals slowly got bigger and better. Goals changed though, where once a competitive goal to stop more shots than I had the game before (I was a goalie when I played hockey) or to make it downriver in my kayak a few minutes faster, suddenly I was making goals for others. I stepped into politics and advocation, trying to raise awareness for PH and for our patients. I set goals to talk to my elected officials, and I use that spirit to otherwise help those who need it, both in my hometown of Marietta, and those in the PH community.

The cast photo from the first Shakespeare By The River production in Marietta

All of this leads me to the biggest piece of advice I wish I could have given myself, and the best piece of advice I can give any new patient. Don’t give up, and don’t let this thing change you. Find that last little bit of yourself, and don’t lose it. Hang on to it. This disease is bad, but it is not bad enough to lose who you are. The numbers are bad, but outdated, not all doctors know what they are talking about all the time, and you can live with this. I thought I had lost everything, but without even realizing it I kept that little bit of competitive spirit, and it is what got me through. I wish I could go back to myself in August of 2012 and sit down, and inform my beaten down self that I still had that last little spark of myself, and that I would listen to it, and things would get better. I don’t know if it would have helped much, but every day I think about it I wish someone had been there to tell me, even if I didn’t believe them, that I wouldn’t lose myself, I wouldn’t lose that last little piece of who I had been, and in the end things would get better. It is one thing I do try to tell new patients when I come across them, that life is not over, that things can get better. I can’t stress that enough. Use whatever you have. If it is an ember of rage (as Henry Rollins would say) that pulls you through, or a drive to make this a part of your world, or just a desire to make it to next Christmas, you have to embrace that little bit, hold it tight and nurture it, and use it for good in your life as a patient. I chose to fight without even realizing it, and I will keep fighting for every breath, every day, and for every patient in our community, because I am just competitive like that.

10 months after his diagnosis, and doing better. Kevin and Karen married on May 4, 2013.