“I always believe in hope”

October 30, 2023

Len Crispino is training to walk part of Europe’s famed Camino de Santiago in spring 2024. Twice before, he planned to do it, but his heart problems brought those plans to a halt. Now, at age 75, after an aortic valve replacement, he’s ready to tackle the challenge.

Len and his wife, Marisa, have already travelled a long road with his health issues, including treatment for two cancers. Len, who joined the board of Heart Valve Voice Canada in 2023, shared his story.

How did you learn you had heart valve disease?

I was in high school, 16 years old. I thought I would join the football team. Somebody came in to do a stethoscope check on us. They told me there was a murmur in my heart. And they said, “We recommend you not play football.”

So that was the start, almost 60 years ago. And that was scary as hell.

How did this affect you?

I never told my parents. They were immigrants; we came to Canada to find a better life. The last thing I wanted to do was to put an additional strain on them. So I had to deal with this on my own.  I would get checked every few years by doctors.

It was my aortic valve and there was some leakage. I didn't fully appreciate the severity until later.

I was always tired, but I'm not sure I attributed this to my heart valve. Eventually I needed a pacemaker and later an ICD (implantable cardioverter defibrillator) to keep my heart going.

What happened to make your heart valve need more attention?

When I was 51 in 1999, I was diagnosed with kidney cancer. I lost my left kidney and part of my right one.

Then in 2012, I was diagnosed with lymphoma. After initial chemotherapy failed, they tried a different medication, delivered in a pill. Fortunately, that was effective against the cancer. But eventually, it caused further damage to my heart.

I had a lot of fatigue. I would go for a walk, and I'd have to go back home. I remember lying on the couch and being out of breath. In 2016, I was hospitalized with heart failure.

What treatment did your doctors recommend?

I needed my aortic valve replaced. But I was considered too high risk for surgery because of my other conditions. A TAVI procedure (transcatheter aortic valve implantation) was ruled out because of the size of my valve opening.

So they were going to treat my heart failure with medication.

What changed after that?

One of my cardiologists — he’s kind of my guardian angel — said, “We’re not going to give up.” He kept looking for a way to make the surgery possible. And that’s when things began to change.

So in 2018, I had open-heart surgery to replace my aortic valve with a tissue valve.

Looking back, it was a matter of working with my healthcare team — me being ready to take the risk of surgery, and them being willing to be part of the solution, and finding ways to make it happen.

What helped you recover?

I went through rehabilitation for several weeks; that helped. Today I'm seen by one or more cardiologists once a month, if not more. My medical team looks at everything, including my kidney and the lymphoma, which is in remission. So far, so good.

I feel like I’m the most fortunate person on this planet. And I’m going to do part of the Camino in April.

What do you wish more people knew about heart valve disease?

People need to know about the importance of being treated early. I think there's a large part of our population that does not get treated because they're not detected early enough.

Also, it’s not just about the physical. It’s about the emotional aspect and the fact that you're not the only one going through this. Your whole family is going through this.

I'm a fairly hardy individual; Marisa kiddingly calls me the “strongest weakling.” And it's become a big joke. But I couldn’t have done this without her and our daughter, Stefanie.

The ability to provide hope for people is absolutely fundamental. I always believe in hope. Heart Valve Voice is about giving people hope. That's why I joined the board — because it helps people have passion for their condition and be able to do something about it.

Len Crispino is an active volunteer and board member of Heart Valve Voice Canada. He previously held senior roles in the Ontario Public Service and the Ontario Chamber of Commerce, and founded Foreign Affair Winery in Niagara, Ont., with his wife, Marisa

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