Her heartfelt journey

Kingstonian Kristen Jones has been followed by Kingston Health Sciences Centre (KHSC) cardiologists since she was diagnosed, at two years old, with a bicuspid aortic valve. It’s a congenital condition that means she was born with an aortic valve with two flaps instead of three.

The aortic valve controls the flow of blood from the left heart chamber to the aorta, which is the main artery that delivers blood to the body. With only two flaps, Jones’ valve didn’t close tight and impacted the blood flow out of her heart.

“Other than having regular echocardiograms (echo) and electrocardiograms to measure and track changes, my childhood and much of my adult life were unaffected by congenital heart disease,” says Jones. “As a child, my parents wanted me to always be aware of my surroundings, as any major injury could introduce an infection that would pose a risk to my heart.”

Jones was followed by her care team for issues such as aortic valve stenosis, a narrowing of the valve due to it working harder than normal, as well as an enlarged aorta, and aortic regurgitation, which is the backward flow of blood through the valve.

“The only time I felt very aware of my condition was in my early 20s when I was pregnant with my son,” explains Jones.

“A high-risk obstetrician provided care throughout my pregnancy. At 24 weeks, because my condition can be inherited, a fetal echo was done on my son and luckily nothing showed up.

“As was suggested by my cardiology team, my tests during pregnancy showed less aortic regurgitation and that’s because your heart beats faster when you are pregnant, giving blood less chance to flow backward through the valve. But, it didn’t last.”

Moving from mild to moderate to severe

“The status of my condition started to get worse after my pregnancy. My care team told me I would likely need a valve replacement by middle age and that this was to be expected simply because the valve had to work harder over many years.

“Right on cue in my early forties, my status drifted from moderate to severe. This meant more testing.

“Cardiologist Dr. Amer Jorhi ordered an MRI to get some additional baseline measurements, and once I was referred to cardiac surgeon Dr. Darrin Payne, I had my first treadmill test to assess my heart under stress and if I would need anything beyond a valve repair during surgery.”

Next, Jones had a CT scan to help measure where her heart sat in her chest cavity and an angiogram, a test where a special dye is released into the arteries surrounding the heart using a catheter or tube inserted in a blood vessel. The dye makes it possible to see blockages when an X-ray is taken.

“The angiogram was the first pre-surgical step, and it was a big one for me.

“Walking into the catheterization (cath) lab and hopping up on the table was so different from all my other tests. It was a little surreal and that’s when I started to get anxious. Dr. Paul Malik was getting to a tricky spot in the exam, sensed my discomfort and simply asked the nurse to give me something in the IV. I appreciated his steady voice with no cause for alarm. 

“The team in the cath lab was so prepared and reassuring at every step of the way, and I eventually realized this is what they do all the time and it was my job to just show up and let the pros handle it. It really helped prepare me to walk into the operating room (OR) on the day of my surgery. Even though the OR is a much bigger place, it’s a structured and sterile setting with bright lights just the same.” 

Take heart

After waiting four months for her surgery to be scheduled, it was cancelled twice due to pandemic-related capacity challenges.

“When I was booked and cancelled twice I just rolled with it. It wasn’t just me rolling with the punches of COVID, my surgeon and the rest of my care team were also rolling with it so the last thing I wanted to do was add stress for anyone.

“I also felt that if the hospital wasn’t ready for me, then I didn’t need to be there. My surgery was still considered elective so I knew that if emergency cases came up I would be bumped and I was ok with that because I had faith that if I was the emergency, they would be doing the same for me. 

“Waiting for surgery taught me to worry less and trust more.”

Jones had her surgery in May 2022. Because of her aortic valve stenosis and regurgitation, her ascending aorta was enlarged and needed replacing during surgery. She now has a mechanical aortic valve and a prosthetic ascending aorta.

“There’s something special about someone who has literally touched your heart. My surgeon Dr. Payne is that person. He is one in a million and I was very lucky to be under his care.”

Life after surgery

Four days after her surgery, Jones was sent home with monitoring equipment so her care team could assess her recovery remotely.

“Having the monitoring equipment for those initial few weeks was very helpful and was what helped confirm I needed to go to the Emergency Department when suddenly while sitting with my feet up doing nothing, my heart jumped to 170 beats per minute and didn’t come back down. 

“I ended up being admitted to the hospital and had a cardioversion (a procedure that uses quick, low-energy shocks to restore a regular heart rhythm) to correct atrial fibrillation (the most common type of irregular heartbeat).”

After her time back in the hospital, Jones says life is pretty normal.

“Taking blood thinners and making sure what I eat doesn’t interfere with my medication have definitely been daily reminders that I have new parts in my heart.”

The tattoo Jones got two months before her surgery is also a reminder. She decided to get it after realizing she may not be able to get another tattoo once she was on blood thinners for the rest of her life.

“The lyrics of The Tragically Hip song Grace, Too have always resonated with me, especially the words I got tattooed on my forearm, ‘armed with will and determination’. 

“It gives me inspiration and reminds me we can all do hard things.”