At a pre-operative appointment before her valve replacement surgery, Pam Husband asked if there was a chance the operation could be delayed.

The nurse was blunt. “Pam, the degree of stenosis in your aortic valve suggests you shouldn’t be able to walk or talk. Your surgery will not be delayed.”

Pam had been avoiding valve surgery for about 30 years — part of the reason the stenosis or narrowing of her valve was so advanced. Now she was desperate to get the operation done. Along the way, she learned some difficult lessons that could help anyone facing valve disease.

Pam, a long-time heart health advocate and co-founder of the Canadian SADS Foundation, shared her story with Heart Valve Voice Canada.

When did you find out you had valve disease?

When I was in in my 30s, I went to emergency in a lot of pain, for what turned out to be appendicitis. The emergency physician noticed a strong heart murmur.

After my appendix was removed, I was referred to Toronto General Hospital for cardiac assessment, and that's when they diagnosed a bicuspid aortic valve.

What happened after your diagnosis?

At the time I had no other symptoms, and the bicuspid valve wasn't interfering with my life. So, my family doctor kept an eye on things at annual checkups. When the murmur became more pronounced after 10 or 15 years, she referred me to a cardiologist.

The cardiologist told me the valve would need surgery one day. But I felt fine, and I was terrified of surgery. I was in denial.

I had an echocardiogram each year. Eventually, the cardiologist told me blood flow through the valve was severely reduced, and I was getting close to needing surgery.

I just said, “Why? I feel fine.”

Looking back, I could have asked more questions. I regret that we didn’t have a better conversation — perhaps I brought my own reasons, and the cardiologist didn’t provide a lot of information. I certainly didn't have a full appreciation of what aortic stenosis was, and how it would ultimately cause some damage to my heart.

So what changed?

My energy level was gradually decreasing, but it was subtle. By then I had turned 65, so I wondered how much was due to normal aging. I never felt particularly breathless; I never had angina or chest pain.

Then I went to Europe in 2017, and as I walked around, I became very aware that on even a slight grade, I would feel chest pressure, and I would feel breathless. The pressure was worse when I lay down at night.

The day after I got home was my annual cardiac assessment. As soon as the echocardiogram came back, I could see the look on my cardiologist’s face. “You're out of time,” he said.

So you had valve replacement surgery. How did that go?

The surgeon was very good at explaining the options — tissue vs. mechanical replacement valves. And I had done my homework. So we agreed that a tissue valve was the best option for me.

I was surprised when he told me that I had an aneurysm on my aortic root — a weak spot that may have resulted from blood being backed up by the faulty valve. “That will need to be repaired, which I will do during surgery,” the surgeon said.

The surgery went well, despite some complications. My initial recovery was good, although I experienced an episode of atrial fibrillation (Afib) in hospital. And unfortunately, there was an outbreak of c. difficile bacterial illness on my floor, so they were anxious to discharge me.

I went home after six days, very weak. I ended up in emergency the next day with more Afib. I had to go to my nearest hospital in Mississauga, not Toronto General, where the operation had been performed.

Because it was a different healthcare region, my file couldn't be called up. So, there I was in emergency without even a cardiac consult, and nobody really knowing what to do with me.

Finally, after two or three trips to emergency, the cardiologist there put me on blood thinners, because Afib can cause blood clots and stroke. As my heart healed, the Afib went away.

As you recovered from surgery, what helped?

I was living alone, but my sister and my daughter were very helpful for the first couple of weeks at home. By the time I was on my own again, most of the worst things were behind me. The Afib did not come back. And I had good neighbours who helped me.

I also went to cardiac rehabilitation, which was a very positive experience. It gave me confidence about physical activity, and a routine to follow. The confidence came also from seeing my progress as I was followed in a structured program.

My initial referral to cardiac rehab was for a program far from where I lived. So, I did some research to find one closer, and asked for a new referral.

It was well worth the effort. There’s a huge emotional benefit to cardiac rehab that isn’t always appreciated.

How are you doing today?

I’m 75 and healthy. I can go out and walk 10,000 steps a day. I think I'm pretty darn lucky.

My heart has an enlarged atrium, which was probably somewhat provoked by delaying the surgery. Currently, I am being followed by cardiologists at a specialty clinic, and I'm very pleased with that service.

What do you wish more people knew about bicuspid aortic valve?

It seems my family has an inherited valve issue. My nephew also has a bicuspid aortic valve, as does his son, and my father’s health history suggests he may have had it too.

I would urge anyone who has a family member with bicuspid aortic valve to get checked. An early diagnosis can prevent potentially bad outcomes.

What advice do you have for someone facing a diagnosis of valve disease?

Understand your diagnosis and ask lots of questions — especially if you’re asymptomatic as I was.
Do not shy away from hearing scary information; this could save your life. Know that denial is not your friend.
If you have a close family member with bicuspid aortic valve, get screened.
Have a plan for after your surgery. You need people who love you, and whom you can trust, to be with you in the beginning. Make sure you know what to do, where to go and who to call if something unexpected happens, such as Afib or an infection.
Advocate for yourself. If you have concerns, don't be fearful about addressing them and finding a way to create the team that you need.

Learning the hard way