“It was my heart valve all along”

Kathy Howes couldn’t get an explanation for her dizziness, fainting and racing heartbeats — until a test revealed she needed urgent valve surgery.

Kathy Howes could not believe what the doctor was saying. “Your mitral valve is severely damaged. It needs to be repaired or replaced — now! Why has it taken you so long to get here?”

Kathy and her husband, Rob, were stunned. They knew she was living with mitral valve prolapse (MVP); that meant the flaps on her mitral valve were enlarged, preventing it from closing completely. But a cardiologist was monitoring her heart with yearly echocardiograms; her most recent test had shown no immediate concerns.

Now, suddenly, she needed urgent heart surgery. This news came after Kathy underwent cardiac tests in preparation for a knee operation (which was quickly put on hold). Kathy shared her story with Heart Valve Voice Canada.

When did you first learn you had a heart valve problem?

In 2013, when I was 60, I was going to have a repair to my rotator cuff, and I had a pre-op assessment. The doctor who listened to my heart heard a gurgling sound. It turned out to be mitral valve prolapse; they told me it was moderate to severe.

The doctor said I might need to have the valve fixed when it became severe, but that could take 10 or 15 years.

What happened after your diagnosis?

I did not have much information. One doctor told me to be concerned if I was out of breath going upstairs. They said if I woke up gurgling or even coughing up blood, it could indicate heart failure. Meanwhile I started seeing a cardiologist to keep an eye on my valve with annual echocardiograms.

• Learn the signs and symptoms of heart valve disease.

What did you experience after that?

My heart would race, especially when I was going to bed. I was short of breath sometimes. But I kind of ignored these things because I could still function, and they didn’t line up with what I had been told to watch for.

I retired in 2021 and I was looking forward to doing more walking on the Trans Canada Trail, which goes right near our house in Chemainus, on Vancouver Island.

Then one day I was more tired than normal. I went out walking and I remember thinking, “There’s something wrong.” My legs felt like rubber; I was dizzy, lightheaded. I was crossing a busy road, and suddenly everything went black. I fainted.

I wondered if I was experiencing anxiety; my family doctor prescribed Ativan, which helped me a little. I called my cardiologist; he told me to stop taking one medication.

How did this affect your life, and what did you do?

Things got worse. I didn't feel well standing up; I spent a lot of time lying down. I was getting lots of migraines and dizziness. I had two more episodes of fainting, and ongoing anxiety.

I was horrendously fatigued and my brain was foggy. Doing yoga helped, but I spent a lot of time on the couch. My kids were shocked because I’ve always been pretty active.

When I went to the doctor or our local urgent care centre, I would tell them about my MVP. But nobody connected it to the symptoms I was experiencing. Instead, I was treated for a panic attack and anxiety; I was referred to a physiotherapist for my neck and back.

Then suddenly you need urgent heart surgery. What happened next?

The surgeon spoke to me about my treatment options and helped me understand the choice between a mechanical and a tissue replacement valve. I decided on a tissue valve.

After the surgery I had tremendous atrial fibrillation (Afib) — the racing heart I experienced earlier. I learned it was caused by a severely enlarged atrium above my mitral valve. I was in hospital for 11 days to get the Afib settled down, thanks to medication and a pacing device.

What do you wish you had known earlier?

After my surgery, a wonderful nurse-practitioner in the hospital helped me understand what I had gone through over the past couple of years. “All the things that you've told me up till now are totally related to your heart,” she said.

I finally felt validated. I had thought I was failing, or being lazy. But it was my heart valve all along.

Also, several healthcare providers told me that women present differently with heart issues.

How are you doing now?

I'm still overcoming some trauma — mostly from all those months of trying to figure out what was wrong, and feeling that nobody understood.

But I’m feeling good. I go to bed happy at night. I don't go to bed wondering what's happening.

What do you want other people to know about valve disease?

I’d like to see more awareness of heart valve symptoms, particularly in women, among front-line healthcare providers.

People need to advocate for themselves and ask questions. This is especially true for women. We present differently than men, and I think we tend to get labelled as anxious, especially as we age.