Advocates in St. John’s share their stories for Heart Failure Awareness Week
In honour of Heart Failure Awareness week, some people in St. John’s are sharing their experiences with the condition.
“We have perceived about 14,000 people with heart failure in Newfoundland,” said Rodolfo Pike, a nurse practitioner with the Congestive Heart Failure Clinic in St. John’s.
Pike said the week is an initiative by a number of national organizations, such as Heart & Stroke Foundation of Canada, to bring awareness to the impact that heart failure is having on people across the country. This year the awareness week spans May 1-7.
“It’s a debilitating condition that once diagnosed, there is no cure,” Pike said. “But, we do have fabulous treatments that we can use to improve the problems with heart failure.”
Pike said it’s important to understand the warning signs, such as shortness of breath.
“Know that what you’re experiencing is not normal,” Pike said, regarding people who are often short of breath. “There are multiple reasons for what can be causing shortness of breath, but we want to make sure that people who are actually experiencing heart failure are getting rapid assessment and rapid diagnosis.”
According to Pike, other symptoms include having to sit upright to breathe at night, unexpected rapid weight gain, and swelling in your ankles, abdomen, or lower back.
Pike says virtual appointments have been a big help with heart failure patients. His work at the Congestive Heart Failure Clinic is centred around trying to find the right balance of medications for patients.
“The difficulty with that, sometimes, is trying to get the medications in play at an accelerated rate or at an early rate because of the demands of having a high volume of patients in the clinic.”
He says the balance of medications should be found within three to four months, but it didn’t usually work out that way at in-person clinics.
“Oftentimes, we were finding ourselves beyond that because of the constraints on human resources in our clinic.”
However, Pike said since the virtual clinic was implemented, they’ve been able to treat patients a lot faster and find the right balance of medication by around 10 weeks on average. Pike said the virtual clinic also offers other benefits, such as being able to reach patients further away.
“We’re able to access patients that are not in the St. John’s metro region, patients who would have traditionally driven four to five hours for repeat visits within our clinic to get those medications.”
Pike said some patients can receive a blood pressure cuff, a weigh scale and an iPad to monitor their own vital signs at home.
“They’re able to sit in their own home, get care provided by the heart function team from afar through phone visits at an every two week interval and get all their therapies titrated.”
One beneficiary of the home monitoring program is Karen Goodnough in St. John’s.
Her experience with heart failure began in 2020.
“I can distinctly remember getting up one morning,” she said. “And stopping on the stairs and saying to my husband who was sitting on the chesterfield, ‘There’s something wrong, there’s something wrong with my breathing, I don’t know what’s going on.'”
Goodnough would later learn she had an enlarged heart. But, the journey to that diagnosis wasn’t easy.
“I did go to St. Clare’s and the first diagnosis was a misdiagnosis,” Goodnough said. “They told me I had COPD, so that was rather discouraging because I knew I didn’t have COPD. I mean, I don’t smoke.”
Soon after, Goodnough did a stress test and an echocardiogram with a cardiologist
“I left the hospital and within 40 minutes I was called back and I do remember his words, he said ‘I can’t candy coat it, but you have a very weak heart. You have to come to the hospital.'”
Goodnough was hospitalized for about a week and still didn’t have much information on her condition.
“They released me with no support,” she said. “I felt like I was floundering…. You’ve just gone through this traumatic experience and you know something is wrong with your body and you’re discharged and you’re still not feeling any better.”
With her heart getting worse, Goodnough ended up hospitalized again a few months later, during the height of COVID lockdowns.
“Like many people, I couldn’t have my family or friends close to me at the time,” she said. “It was scary.”
Eventually, Goodnough was admitted to the cardiac care clinic where she had a much better experience. “It’s important to have some health professionals to contact a group, an organization who can answer your questions and that did come eventually through the support of the cardiac clinic.”
“Once I got into the system and they identified what was wrong, the care was phenomenal,” she said. “But the hard part was getting into the system and getting the right diagnosis and getting the right treatment.”
After getting the right medications prescribed to her, Goodnough said she slowly regained her strength and began exercising and eating properly.
“I’m feeling very good now and I’m stable and sort of back to some of my normal activities.”
Amidst all of Goodnough’s struggles in getting the right treatment, her husband died suddenly following a heart attack.
After her experience, Goodnough has some advice for people.
“Listen to your body,” she said. “You know if something’s wrong. Don’t ignore it. Pay attention to it and make sure you follow up with your healthcare providers.”
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