Growing up with valve disease: Danny’s long journey

Danny Covey recovering from heart surgery as a child, and in 2017.

Growing up in Regina and later in Ottawa, Danny Covey never got to know his gym teachers. 

Danny was born with complex heart malformations affecting his aortic and mitral valves. He had three major heart surgeries before age 16. This meant no phys ed class for him.

“I heard that my gym teacher was a really nice guy, but never met him,” Danny recalls with a laugh. “I was the kid who stayed in the classroom, drawing.”

That’s just one of many ways Danny’s life was affected by valve disease, in a journey that began at birth. Now in his late 40s, Danny shared his story, and the lessons he’s learned along the way.

How was your valve disease first diagnosed?

When I was a few months old, I started choking and then passed out. My parents rushed me to the hospital. I was revived. They thought I had choked on some food. But then it happened multiple times. I would pass out, stop breathing, turn blue. 

My parents visited doctor after doctor, until a specialist in Saskatoon listened to my heart and said, “He's got a trill” — a kind of vibration. Eventually, they determined that there were problems with both my aortic and mitral valves — specifically, sub-aortic stenosis and supravalvular mitral stenosis.

What treatment did you have in those early years? 

At 18 months, I had my first open-heart surgery at SickKids Hospital in Toronto. At the time, this was very experimental. I was given a low chance of survival. 

The surgeons released a stricture on my aortic valve to open it up. They also repaired the mitral valve so it was less leaky. Amazingly, the surgery was a success.

After that, life kind of hummed along for several years. Then when I was around seven, my aortic valve began constricting again. I started going into congestive heart failure.

I would need a second open-heart surgery at age eight.

That operation went well, but the aortic valve kept wanting to close up. When I was about 12, they tried to open it with a procedure using a balloon. That was not a permanent fix; it just bought me some time.

That time ran out when you were 14. What happened then?

I had my third open-heart surgery. This time they removed and replaced my aortic valve. 

Because I was going through puberty and growing, they decided to put in an adult-sized valve. They selected a mechanical valve instead of tissue. In retrospect, I'm very thankful, because it has lasted more than 35 years.

How did the valve replacement change things?

That's really when, for me, life began. It's like my childhood was a series of storm clouds. But after the valve replacement, for the first time, there was sunshine. At 14, I could run, I could exercise, I could lift weights, I could do things. And that's really, for me, when I went from being the kid who has heart problems to the man who had problems as a kid.

As you moved into adult life, how did valve disease affect you?

So I’m married, we're raising three kids in Ottawa. I’ve established a career in graphic design and marketing. 

I'd always had a dream of getting into martial arts. I had started doing that, against the advice of my cardiologist because I was on blood thinners, which increased my risk of bleeding. I finally got his OK that I could train but not compete in tournaments. “No hard hits, or anything like that,” he told me.

Danny trained in martial arts, eventually earning a black belt.

Then in my late 30s, I started to feel winded after running hard or training. At first, I attributed it to a few extra pounds I had put on; I decided to work out harder.

Of course, now it's obvious, as I’m explaining this, that maybe it was my heart. But at the time, it had been so many years since I’d experienced heart issues, that it did not occur to me.

Then I started to feel very unwell, with almost flu-like symptoms. My cardiologist recommended a CT scan of my heart. That's when they realized my aortic arch (the curved part of the aorta just above the heart) had drastically enlarged. It could rupture any time.

They decided I needed another open-heart surgery. The plan was to replace my aortic arch and the mechanical valve with one single piece. The valve was still working great, but it made sense to replace it.

This was your fourth open-heart surgery. How did it go?

This was April, 2017. I was 40.

When they opened me up, the aortic arch had already burst. They weren't sure when it happened. The only thing I had noticed in the days leading up to surgery was massive pressure, like an elephant sitting on my chest.

So that operation became a mad dash to save my life. I went nine minutes with no blood or oxygen. I have some neurological issues stemming from that.

Ultimately, they did not replace the mechanical valve; they implanted a synthetic piece to replace the aortic arch.

How are you doing today?

Things have been going well; I'm still getting checked annually. The replacement valve is still working very well. 

When I had the valve replacement in 1990, the longest somebody had lived with one of these valves was 12 years. I ask my cardiologist every year whether I can expect mine to keep going. They're saying if you take care of your health, those valves can last indefinitely now.

I take blood thinners daily, because I have a mechanical valve, and I get my blood checked once a month. The blood thinners have not been a problem for me.

I retired from martial arts last year, not because of my heart, but injuries. There's a gym near my house where I work out with my kids, lift weights, run. I stay within my limits and keep active. I believe that if you have health, you should use it.

How did valve disease affect your family, both growing up and now?

When I was little, of course, I was unaware of everything my parents went through. But writing my memoir, Scar Tissue, gave me a new appreciation for what parents of heart patients go through, because it's absolutely devastating. Fortunately, my parents’ faith and their large community of support helped tremendously.

For my wife, Carly, and our kids, my last surgery gave them an understanding of what I went through as a kid. And I think it gave them a greater appreciation for me, as a dad and a husband.

Danny and his wife, Carly, with their three children.

Before the operation, I wrote letters to each of them, in case I passed away. I think they all read those letters, even though I survived. So really, there was nothing left unsaid. They know exactly what my dreams, hopes and wishes are for them. I think that's helped us going forward. We're close.

What advice would you give someone who’s been diagnosed with valve disease?

You have to advocate and fight for your health. I've had excellent care, but sometimes, you do have to absolutely advocate, if something's not sitting right.

At the same time, I think when the doctors tell you to do something, follow their advice. If they’re telling you to do cardiac rehab, start walking every day, do these exercises, eat like this — then 100% take that advice.

If you have any new symptom, get it checked out. It may be nothing, but let your doctor tell you it's nothing. I have felt like the boy who's cried wolf several times, but that’s OK. I've felt something, I've gone to my cardiologist, been tested, and it turns out to be nothing. 

Finally, I would say, find a good community of people to help. And accept that help.

It’s not always easy. After my last operation, we had people coming in and doing things. And it was hard for me just to accept that. But we needed it.

Your community will depend on who you are. For me, it was my family, my dojo, our church family. Whatever that group looks like, you need some people around you, just to step in and help in whatever small way that they can.

How do you try to help others?

That’s what has driven me, really, to share my story — to give other people hope. There's a quote that I came across by Brene Brown: “One day, you will tell your story of how you've overcome what you're going through now, and that will become part of someone else's survival guide.”

When I go back to the University of Ottawa Heart Institute for a checkup or test, I make it a point to go up to my old room and talk with the patient who's there. I'll kind of joke and say, “Hey, you're in my old bed.”

I just ask them what they’re in for. And I tell them I was there eight years ago. “I got through it. And I'm doing great now, and that'll be you.”

On a more practical level, when someone is going through a health challenge, I don't ask, what can I do to help? I just try to find something. That can mean just making a meal. Or mowing their lawn. Or one thing that I've done a lot is buy a hospital parking pass, for the family to visit. It doesn't have to be anything big, just small things.

What has your long journey with valve disease taught you?

This is hard for some people, but I believe there's a reason this happened to me. And if there’s a purpose, there are things I can learn from it, and grow.

Part of what I've learned is just to slow down. We're not guaranteed anything, so enjoy what you have, and be grateful. And I think in my own family, we just try and spend time together, because what makes time precious is that it doesn't last forever.

I wouldn't want people to go through what I’ve experienced. But in retrospect, I'm glad I've gone through this, because now I can step in and help other people.