A failing valve at 39

Darlene with her sons Jamie (left) and Josh soon after her valve surgery in 2001.

The cardiologist thought he was looking at an echocardiogram of the wrong patient. The mitral valve appeared so damaged — it couldn’t belong to Darlene Potts-Edwards.

Darlene remembers that moment with a shiver. Then age 39, she was at her regular cardiology appointment to monitor her mitral valve prolapse. She had been living with the condition for 14 years. Apart from the annual echocardiogram and checkup, she rarely thought about heart valve disease. She was too busy working and raising two active boys with her husband in Kingston, Ont.

Now, suddenly, her valve was failing and she urgently needed open heart surgery. Darlene shared her story with Heart Valve Voice Canada.

When did you first find out you had valve disease?

I was 25 and had just delivered my first baby. At my six-week postpartum checkup, the ob-gyn listened to my heart with a stethoscope and said it sounded like a seagull crying — high-pitched and squeaky.

He referred me to a cardiologist; I had an echocardiogram before my appointment. The cardiologist told me I had mitral valve prolapse with mild regurgitation.

“You probably have nothing to worry about,” he said. If I eventually needed heart surgery, he thought it would not happen until my 70s.

He did say I should take antibiotics when I go for certain dental procedures. And I have done that diligently ever since.  

What happened after the initial diagnosis? 

Every year I would go for my echocardiogram and see the cardiologist. Basically, he would say, “You’re doing really well. Nothing has changed.”

I developed an arrhythmia after 13 years or so. The cardiologist suggested going on a beta blocker to settle down my heart rate. But I didn't do that at that time, and I was fine.

What changed? 

In March, 2000, I went with my elder son's hockey team to a tournament in Toronto, and started feeling like I had a bad cold. I had no energy at all. I was coughing and felt like I had bronchitis.

Things didn’t get better. I was working as office manager in a dental office, and when I bent down to get charts out of the lower file drawers, I would feel lightheaded. I was still coughing; I was not feeling well. My family physician thought I had a virus.

That summer I was out a lot with my kids riding bikes, going to the gym, busy as ever. But my health was getting worse. I would be off balance. I could barely ride my bike. I would be out of breath, and my heart would race. And I was coughing, especially lying down, when I went to bed.

So you were pretty sick. Then what happened?

I had my routine cardiologist appointment in December. This was actually two years since my previous checkup — he had suggested a two-year gap since things had been going fine.

That’s when my cardiologist saw the damaged valve on my echocardiogram, and thought it must be someone else’s test. It was a real shock.

He told me right then and there that I was going to need heart surgery. That's when I became afraid, especially thinking about my kids. They were 11 and 14 at the time.

How did you prepare for valve replacement surgery?

I was referred to a heart surgeon and she sat down with me and my husband to explain valve replacement options. She recommended a mechanical valve because I was young, and it would last a long time. A tissue valve would last about seven years, she told us, so they are more often used with older patients.

But she explained that with a mechanical valve, I would need to take blood thinners. That worried me. So, with a lot of thought about my lifestyle and my young children, I decided the tissue valve would suit me best.

I knew it would eventually need to be replaced. But at that time, seven years felt like a long way off. I don’t feel that way now! 

How did your surgery and recovery go? 

Before the operation, I was emotional. The only thing on my mind was to make sure I could wake up for my kids.

Fortunately, everything went well. My surgeon told me afterwards, “You know, Darlene, I think you may get more than seven years out of this tissue valve, because you had lots of your own good tissue around it.”

When I went home, my parents were there to help. My husband was great, and the kids were so helpful and gentle. My oldest son would come in before school each morning and help me get out of bed. We had a lot of support from friends as well. I'm very fortunate.

I chose not to do a cardiac rehabilitation program, because I needed to get back to work. I had received a lot of helpful information from the hospital team about post-op recovery. So, I went to the YMCA on my own and began to exercise in moderation. Everything went well and I was soon feeling much better. 

So life got back to normal with your new valve. Then what happened? 

Things were going well and my annual cardiology checkups showed no problems. Then all of a sudden, I started feeling very tired and coughing a lot, which left me feeling like I was drowning.

That’s when I became really afraid again. I knew what the symptoms meant. It was seven years since my surgery — almost to the day.

So I found out that yes, I was going to need heart surgery again to replace the valve. I was referred to a different surgeon. They told me a mechanical valve was my only option; it should last the rest of my life. I was fine with that.

After this operation, I experienced more pain — perhaps because I was older and had scar tissue from the first valve replacement. But once I got home and started looking after myself and had the right painkillers, I felt better.

I had six weeks to recover before relocating to Ottawa for my new position with the Speaker of the House of Commons. Again, I began slowly going to the gym and managing my own rehabilitation. I started my job part-time about eight weeks post-op.

Darlene and her husband, Roy, in 2024.

How are you feeling today? 

That operation was in 2008. I’m 64 now and things are going well. I’m retired and I love to walk; in the winter I walk on an indoor track several times a week. We have a little cottage we enjoy, and my husband loves to golf; sometimes I join him.

I am managing well with my blood thinning medication. You have to check the blood’s clotting ability (INR) regularly. I used to go to the lab once a month for this, but then my husband suggested we get a machine to do the checks at home. It’s helpful because I get an instant result, and I’ve learned to adjust my medication dosage if need be. It took a long time to feel comfortable doing that, but it’s really helped.

Darlene with Josh and Jamie in 2024.

How are you feeling today? 

Shortly after I retired, I joined the Women@Heart peer support program at the University of Ottawa Heart Institute, which helped me cope with the emotional aspect of my heart valve disease.

As a volunteer with the program, I have talked with many women dealing with different heart issues. They all say the same thing: It's taking too long for women to be diagnosed.

So especially to women, I would say, you have to advocate for yourself. I do speak up more now when I'm in my family doctor’s office. I think being physically active and eating well is also very important.

Also, if I am having some kind of symptom or not feeling well, I write the details in my calendar. This really helps when I get to my doctor; I can give details and ask the right questions. Because it’s easy to forget.