Suzanna Vancouver Island, BC
Suzanna lives with two rare genetic heart conditions that can cause sudden death in otherwise healthy people. Long QT Syndrome and Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT), a condition Suzanna’s doctors suspect she has, affect the heart’s rhythm.
“It is an electrical disorder of the heart. It can run in the family. There are not many specialists in the country who can deal with it. My heart is structurally good, and functionally good, until it’s not,” says Suzanna. “Such a heart is a mystery, as my doctor says. And now they can solve it, with the help of Hope Air.”
The conditions present themselves through fainting spells, which Suzanna started experiencing when she was 13 years old. Getting the correct diagnosis was difficult, as the heart can appear normal on tests and scans. A stress test and an electrocardiogram revealed her condition. “My faints are triggered by physical and emotional stress,” she says. “My condition needs to be controlled. Any faint could be fatal.”
Because of the hereditary nature of the conditions, Suzanna's two sons were tested genetically as well. The genetic test showed the youngest son has the same Long QT Syndrome mutation as Suzanna. Her two sons were referred to Toronto from their home on Vancouver Island for further evaluation by genetic cardiology specialists. “We had a great need to see a genetic cardiologist. I didn’t think it was possible for us to see this specialist until my cardiologist said SickKids and Toronto were the best bets.”
Suzanna’s doctor also arranged for her to have an appointment at the Peter Munk Cardiac Centre at Toronto General Hospital to assess her condition and help her find the correct medication. “On the Island, there are not many specialists who can maintain cases like ours. We couldn’t afford to pay out of pocket to fly to Toronto, and my husband needed to accompany us, because our condition is associated with sudden death.” Suzanna wears a medical alert bracelet and always keeps a defibrillator nearby in case of emergency.
"I just wanted to express my endless gratitude to Hope Air. The flight was just flawless. Because of this, we had an appointment with the best cardiologists in the country.”
As Suzanna prepared for the trip, she came across Hope Air. “I was scrolling through the internet. I didn’t try to find a charity. I didn’t know that such a charity could exist,” she says. “I called in without any hope. I just wanted to find out if it was possible. The customer service was outstanding. The flight was organized in four days when my appointment was booked.”
Suzanna was given new medications, which she hopes will be more effective at controlling her fainting spells. “I had different medications before I went to Toronto, some of them were not successful. I changed my medications for the third time in Toronto. Now it seems to be the right one.”
Suzanna and her children will be able to see specialists in their home community going forward. “The cardiologist in Toronto sent a letter with recommendations for further treatment and testing to my children's cardiologist here,” she explains.
For Suzanna, the appointments in Toronto gave her peace of mind that she and her children have the best care to help them stay healthy. “The main reason I travelled to Toronto was for my kids. We will have good follow up care locally with the recommended plan from Toronto. It is very relieving for me. Genetic testing can be done locally now. We needed the management of the centre and their recommendations for treatment. It is a very good outcome. I just wanted to express my endless gratitude to Hope Air. The flight was just flawless. Because of this, we had an appointment with the best cardiologists in the country.”