A few months ago, I had another surgery.
That makes it well over 100 operations in the past 31 years.
It did not go well.
This was the second surgery this year – had one in fall too – but that’s just another footnote so don’t worry too much about that one.
No, this surgery was to implant a new pacemaker into my chest. This makes number 10 or 11 or 12 in the last 31 years. I honestly can’t remember so if people ask I pick the middle one and say its number 11. It might be number 15 for all I know.
The surgery was scheduled for 90 minutes. After 3 ½ hours the surgeon was frustrated and at a loss. He was having a very, very difficult time implanting a new wire lead into a right atrium that had signs of fibrosis (scar tissue – I assume from 100+ surgeries over the years). Thankfully for me he took a quick break, huddled with colleagues around the globe and persevered. After 6 grueling hours, he was successful.
You see, I am 52 years old and have a transplanted heart. I received this unbelievable gift in a life-saving operation on July 7th 1986 when I was 21. I am the first, and one of only two people on the planet, to play a professional sport after having undergone a heart transplant (the other – my pal professional golfer Erik Compton). I have told my story in a book I wrote a few years ago but I am not trying to sell books so we won’t talk too much about that either.
No, this is about telling the truth. This is about being open and honest about both a gift and burden that I have carried around for the past 30+ years.
‘You make it look so easy’
This is what was uttered to me at a dinner by one of my best friend’s wives.
It was a big celebration dinner – like 70 people. We had been at my foundations golf fundraiser for most of the weekend. A ‘typical Las Vegas’ weekend. We had, as usual, burned the candle at both ends. Late nights dinners and dancing, early mornings on the golf course. Afternoons at the pool. We were enjoying the Vegas lifestyle that brought me here for the first time in 1987. Like a magnet, I was drawn to everything Vegas. It suited my personality. It suited my ambition. And it suited me. It is safe to say that I love Las Vegas.
This dinner was the climax of a great fundraising weekend. More eating, more laughter and more drinking. More Vegas.
Acting as the host, I visited with each couple at the dinner, catching up, and lapping up the love and affection of my closest and dearest friends. These were my true friends in every sense of the word. They had been with me through all my ups and downs. They loved me for who I was and best of all – they didn’t hold anything back.
So when I sat down with Kim, we chatted about all the usual stuff…kids, life, work…all the catch-up stuff. Then she said those words.
“Simon, you look so good…people can’t believe that you’ve had a heart transplant and that it was 31 years ago. You make it look so easy”.
My answer…as I usually do. I deflect.
I deflect. I smile, and I laugh…and I quickly change the subject back to the inquisitor.
Let’s talk about ANYTHING but me.
This has been my strategy for the past 3 decades. People ask, I deflect.
‘How are you Simon?’ …is always met with a lightning quick… ‘Good…tell me about you…what’s new?’ I deflect. I smile. I laugh.
‘Is the heart okay’…I deflect. I smile. I laugh.…and say “my wife doesn’t think I have one…how’s things with you”?
‘You look good Simon; you been working out? I deflect. I smile. I laugh. ‘not enough…getting old…how ‘bout you…you look ripped!’
No matter the question. If it pertains to me or any perceived positive or negative aspect of my health. I deflect. I smile. I laugh.
How am I? I AM good. But rest assured I am fighting. I am fighting the battle every day to survive a very, very difficult disease. As organ transplants have become increasingly successful, those that receive them are still burdened with potentially (and most likely) horrific side effects.
Don’t get me wrong. I ain’t complaining. Far from it. I am so damn grateful for all that I have been given in this life that I spend every waking moment trying to pay it forward. So that’s not it. No, this is about being honest about ‘what it takes’. You see, Kim is not the only one that has commented on ‘how easy it looks’ over the past 3 decades.
100+ Surgeries in 31 years.
I did a quick tally and the following picture is worth the inevitable thousand words.
In the past 31 years, I estimate that I have had more than 100 heart biopsies. This is where they knock you out, thread a small catheter through a blood vessel (vein) into the inside of the heart muscle and yank – yup yank – a small piece of the heart muscle out so they can examine it microscopically to determine the status of the heart and possible rejection. It is the opposite of pleasant.
I’ve had 10, 11 or 12, or 13 or 14 pacemakers. This includes different leads – read: wires – weaving through the inside of my chest to attach to the heart in order to carry the electrical current from the pacemaker to the heart in order to keep the heart ‘ticking’. I’ve had pacemakers in my right chest. I’ve had pacemakers in my left chest. I’ve had pacemakers in my lower abdomen. I’ve had single wire pacemakers, double wired pacemakers. I’ve had pacemakers that lasted 7 weeks, 7 years and even 7 days – that one got infected and almost led to septic shock.
I’ve had 3 cardioversions – this is a complete stopping and restarting of the heart. Like you see on the TV shows when they “get the paddles”. Cardioversion = no fun.
I’ve had stents put in the heart to keep the arteries open that narrow due to arteriolosclerosis. A side effect of transplanted hearts.
I’ve had metal wires holding my sternum together since 1986.
I’ve had more angiograms than you can shake a stick at. Most of these through the groin. Not a great way to spend a day.
I’ve had an uncountable number of x-rays, stress tests, EKG’s. I’ve forgotten about more tests than most people have had dates.
Having a blood test is like ordering a cappuccino.
I have taken medication every day for more than 11,000 days in row. Anti-rejection medication that is designed to combat potential rejection of the transplanted organ. The disclaimer – its side effects ravage the human body. Strangely I am eternally grateful even for that.
There is more…but it doesn’t really matter…you get the point.
Having a heart transplant is hard.
But then I think of the kids. I think of all the kids and the families who also go through this. I think how friggin brave they are, and that people don’t really know. They don’t know the pain. And the struggle. And the FIGHT.
And I also think about the donors. And the donor’s families. And how one’s family’s tragedy and hopelessness turns into another family’s joy and hope.
And I think about the doctors. And the nurses. And the caregivers. And I think about my kids and my parents and my brothers and my wife. And…well…I think about everyone. Everyone but me.
And now, after 31 years, with plenty more on the horizon, I guess I find myself back where I started. I realize that maybe my approach, for me anyways, is right after all.
So when people say ‘Simon, how are you?’
I will smile. I will laugh and I will deflect.
And I will say…
I’m good. How ‘bout you?
About the Author: Simon Keith is the Chief Operating Officer for the Nevada Donor Network, the Organ Procurement Organization for the state of Nevada. He is also the founder of the Simon Keith Foundation, the author of Heart for the Game and a much in demand public speaker. He continues to be one of the longest living heart transplant recipients on the planet.