“I’m coming through this.”

Rena enjoying a sunny day.

Rena was a busy mother of three who worked full-time managing foster care placements for youth. Then, at age 58, she was shocked to learn that she had lived all her life with a congenital heart defect — a bicuspid aortic valve . Rena talked to Heart Valve Voice Canada about her journey and how determination and a positive attitude helped her.

What symptoms did you experience?

I had two episodes that I recall.

When I was 12 or 13, I came out of a shower and told my mother I was going to faint. Then I did — I fell. We thought it was because of the hot shower.

Then, many years later, when my children were grown and I was visiting them, we were playing miniature golf on a very hot day. I couldn’t catch my breath. I felt faint. My son grabbed my arm and sat me down and got me cold water. Eventually I felt better.

How was your valve disease diagnosed?

I had a third episode when I was 58. Again, I came out of a hot shower. My heart started to pound. I felt like I wasn't getting oxygen in my brain.

I lay down on the floor in my robe; if I was going to faint, I didn’t want to fall. Eventually it stopped. But it was freaking scary and it lasted quite a while. Coincidentally, I had an appointment with my doctor that day for an annual physical. You want to talk about luck!

When I told my doctor what happened, she listened to my heart. And she said, “I hear a heart murmur very loud, that I never heard before.” She referred me to a cardiologist.

After I had an echocardiogram, the cardiologist told me I had a congenital heart defect. I remember laughing, asking what that meant.

He says it means you were born with a bicuspid aortic valve. He explained that the valve was like a pie: “It should have three pieces, but you only have two.” So that meant the blood had less room to flow, and also the opening was calcified.

Did anyone in your family have a bicuspid valve?

My dad was a diabetic and had a heart condition, but he did not have a congenital heart defect like mine. After I was diagnosed, I learned that my mother’s father had died two weeks before she was born. Could he have had a bicuspid valve? We’ll never know.

What treatment was recommended?

The cardiologist told me I was not at the point of needing surgery. “We're going to monitor you,” he said. He told me I should watch for symptoms like what I had experienced before, my heart pounding and feeling a lack of oxygen.

I had an echocardiogram every year, but things went along pretty well for six years. It may have helped that I stopped taking long, hot showers!

What changed?

I started to feel some symptoms. My heart would pound, and I'd feel foggy, like a lack of oxygen in my brain. I called my cardiologist.

He couldn't believe how much my valve had narrowed and calcified since last time. His words were: “You need surgery, now.”

And my answer was: “I can't. I'm going on a cruise.”

I was despondent — open heart surgery seemed so scary. This was happening before minimally invasive valve repair was widely available. I talked to my partner, and I called my children. They helped me accept that I needed the operation.

I called up the doctor and said, “I guess I'm not going on my cruise.” He said, “I was waiting for your call.”

What type of valve replacement was recommended?

I was told that if I got a mechanical valve, I would have to go on a blood thinner. Because I have a low platelet count, this would mean I could bleed more easily. So, my surgeon felt that a bioprosthetic valve would be better suited. I agreed to this as the best option for me.

What happened next?

In July, 2012, a few weeks before my pre-op angiogram was scheduled, there was a party to celebrate my partner’s 75th birthday.

I went to get a pedicure and have my hair done for the party. I put my feet in the hot water for the pedicure – and whammo! It triggered another attack of symptoms. I went straight home — no pedicure, no hair — and I cried.

How I made it through that party, I will never know. I put a smile on my face. Nobody knew what was going on.

The next day, I was on my way to work to ask for a medical leave. But I never got there; I had another episode and had to pull the car over. My partner came to get me and took me straight to emergency.

I told them I needed open heart surgery, and even had my angiogram scheduled at the same hospital. When they examined me, everything seemed fine. I didn't have blocked arteries; I wasn't having a heart attack. The doctor said they were going to send me home.

I just said, “I'm not going home.”

She looked at me in disbelief. That’s not really like me, to dig in my heels like that, but I was so scared. I said, “I'm having one episode after another, and I know I need surgery. Please call my cardiologist.”

When she came back after calling him, she said, “We’re admitting you.” I had the angiogram and the surgery within the next couple of days.

How was your recovery?

In my research before the surgery, I learned that sometimes they used a smaller incision — just three to four inches, instead of the long “zipper” incision all the way down the chest. I asked my surgeon if he could do that. He was able to do it, and I really appreciate that.

During the operation, they had trouble stopping my bleeding because of a pre-existing condition; they needed 12 or 13 units of blood. And I had some complications afterwards, including fluid buildup around my lungs.

But there was no problem with my new valve; it worked great from the start.

I went to a cardiac rehabilitation program at our local YM-YWHA. It was wonderful and gave me the confidence to start doing exercise. That helped me get back on my feet during my six-month leave from work.

When I did go back to work, they adjusted my responsibilities so it was a gradual reintegration over six months. That really helped.

How are you doing now?

At a follow-up appointment in April, 2024, the echocardiogram showed my valve is doing fine after 12 years. I am dealing with a few other health issues, but they are not related to my valve.

Because this bicuspid aortic valve can be hereditary, my children were all checked with echocardiograms, and fortunately they don’t have it. I want to make sure the grandchildren also get checked.

What do you want people to know about bicuspid aortic valve?

After all this, I feel very fortunate. But I know a diagnosis like this can be shocking. Take a day or two to mull it over yourself, because you need time. Then don't be afraid to ask questions. Do some research, but don't take what you read on the web as the end all be all. Write your questions down and ask your doctor.

Know that if you need the surgery, it'll keep you alive, and it's well worth it.

Finally, it’s important to have a positive attitude, and surround yourself with people who support you, and who are positive. Once I accepted that I needed the surgery, I always tried to be positive. I went in there saying, “I'm coming through this. I'm not worried.”