‘I’m part of a club that nobody wants to join.’

Dean Snow felt a moment of panic when he heard the cardiologist’s words: “I want to admit you to hospital right away, right now.” His wife had given birth to their son a few days earlier. He needed to be at home.

But an echocardiogram showed there was something wrong with Dean’s aortic valve. He had been short of breath for weeks, and coughed throughout his wife’s labour and delivery.

So he was admitted to hospital. It took several weeks for doctors to determine that Dean had endocarditis — an infection of the heart’s lining that can damage valves. “They decided I needed surgery,” Dean recalls. “My wife was told I would not survive without a valve replacement.”

At age 31, this would be Dean’s second open-heart surgery — and not his last.

Today Dean is 66, a psychologist in Fredericton who works in private practice after a long career in health care, including work with many heart patients. He shared his story with Heart Valve Voice Canada.

What was your first experience with heart valve disease?

I was born with a bicuspid aortic valve . As I understand it, the pediatrician listened to my heart; I must have had quite a loud murmur.

My parents were told that I might grow out of it, or it might require surgery at some point. I was followed by a heart surgeon; every year he would do an echocardiogram and examine me. When I was 12, I had open-heart surgery to repair the valve.

As a young adult, how big a concern was your heart health?

Not a huge concern. In my 20s I began to see a cardiologist every year and have Doppler echocardiograms. They showed that my repaired valve was functioning reasonably well. I was also treated for high blood pressure, and I've had it on and off pretty much ever since.

I could not do contact sports to protect my sternum, which was wired back together. I got into swimming and lost a bunch of weight. They told me the exercise was good for me, and I should keep doing as much as I could.

What triggered your valve replacement surgery at age 31?

I spent a weekend visiting my brother in Ottawa. As we walked around, I couldn’t keep up with him and noticed I was getting short of breath. Eventually I developed a dry cough, and the shortness of breath got worse over the next month. It was especially bad at night; I would wake up coughing and have to sit up.

My GP thought it might be asthma, or a reaction to blood pressure medication. He tried medication changes, but nothing worked.

Finally, after I was hospitalized, the endocarditis was diagnosed and I had surgery to replace my aortic valve with a mechanical valve. I was in hospital a total of six weeks.

How did the operation go?

Before the surgery, I was scared — I mean, really scared. The surgeon went down a list of nine reasons why my case was more complicated than others. One was that I had had open-heart surgery before. He said, “I don't know what I'm going to encounter in there. You could have a stroke. You could have a heart attack.” It was pretty overwhelming.

The surgery was successful. Probably the most emotional part was when my surgeon came into the ICU an hour or so after I'd woken up. He held my hand and he told me everything had gone well.

How did you get the endocarditis infection?

Growing up with my bicuspid valve, I remember being told that I should take antibiotics before major dental work — so, extractions, that kind of thing — but that I didn't need it for routine cleaning.

I think the infection came from a routine dental appointment a few months before I was hospitalized. So, either I misunderstood the instructions around antibiotics, or I wasn't given the right information.

NOTE : Any kind of dental work can result in bacteria entering the bloodstream. People who have had heart valve surgery are at higher risk because it is easier for the bacteria to attach to the surgery site, where it can cause infections, including endocarditis. If you have a mechanical or a bioprosthetic valve or a replacement of valves with any other substitutes (such as homograft or autograft), talk to your doctor about taking preventive antibiotics before any dental or other procedures. See the Canadian Dental Association recommendations on preventing endocarditis, and learn more here about protecting your heart health)

Today I always take 2,000 milligrams of ampicillin — four large capsules — about an hour before I go to the dentist. And I have not had any more issues with infection.

What helped you recover after valve replacement surgery?

Within the year afterwards, I got quite depressed. I think the trauma of it didn't hit me until later.

I was working in health care, seeing cardiac patients and others, and I was having feelings that I knew were getting in the way. I remember talking to a patient who said, “All I think about is dying.” In my mind I'm going, “Yeah. I’m having those same thoughts.”

I told my supervisor that I needed help. So, I actually saw a psychologist. That helped me process the emotions.

Also, my cardiologist referred me to a cardiac rehabilitation program at McMaster University — we were living in Hamilton at the time.

This program did not include a lot of education or emotional support; it was mainly just exercise. But it was really powerful and made a huge difference. That ability to get your heart rate up, to have supervised exercise and get your confidence back… all that really helped me.

I had to get used to the ticking sound that the valve makes; it quickly faded into the background. I also started taking warfarin, a blood thinner or anticoagulant, every day. I still have blood tests every month to make sure the anticoagulation (INR) is in the range for my valve.

You eventually had another heart operation. Tell us about that.

I was in my mid-40s and had moved to Fredericton. I would see a cardiologist once a year, to make sure the mechanical valve was working right. After one test, he called me and said, “Everything looks fine with your valve, but your aorta looks a little bit enlarged.”

I didn't know this earlier, but people born with a bicuspid aortic valve are at higher risk of developing an aortic aneurysm.

NOTE: An aortic aneurysm is a weak or bulging spot in the aorta, the main blood vessel leading from the heart. The aneurysm can cause the wall of the aorta to split or rupture. This can cause life-threatening bleeding and is an emergency.

So, he sent me to Saint John to see a cardiac surgeon. My wife and I were thinking it would be routine; we could have a nice lunch after the appointment.

Then the surgeon said, “Your aorta is enlarged, and I want to operate to repair it, probably this fall.”

I was stunned. We were both thinking, “Oh Jesus, again?”

What happened next?

They did a catheterization which showed the aneurysm wasn't as big as they initially thought. So the surgeon suggested delaying repair until it was larger.

I ended up waiting eight years. They would monitor me with a CT scan every year, then every two years. When the aneurysm reached five centimetres, I had the surgery in 2012.

This made me part of a club nobody wants to join. My surgeon said, “I don't think I've seen any adult patient who’s had open-heart surgery three times.”

Fortunately, the operation went well. I began to exercise right from the day I got home, walking with my son helping me.

At that point I was actually working in cardiac rehab; I had developed the psychology classes for the program in Fredericton. So, with support from the physiotherapist, I was able to participate in the exercise part of the program. Again, it was helpful getting me back on my feet.

How are you doing today?

I'm fine. I walk three or four times a week, 40 minutes at a pretty brisk pace. I use a FitBit to monitor my heart rate and I don't let it go much above 120.

It turns out I have a nerve conduction issue in my heart, probably from the surgeries. It’s called a right bundle branch block. I’ve been told I may need a pacemaker in the future.

How important is mental and emotional health in adapting to valve disease?

*Dean Snow with his partner, Suzette Martin*

It can be really important.

You don’t know at the beginning how heart surgery is going to affect you. So, I encourage people to participate in cardiac rehab if they have the opportunity. Most people are quite anxious when they first come; the program can provide education that is reassuring.

But, as in my own case, the trauma doesn't necessarily come right away. Everyone's different.

We always told our cardiac rehab participants that they were part of our program for a year, even though they might only exercise for eight weeks. So, if someone wakes up one morning having an upsetting memory, or they get really anxious, they can call us back and come in.