Heather Lannon first heard the term heart failure in 2012. That was the diagnosis given to her husband, Jamie, after doctors in Newfoundland referred him to Toronto’s Peter Munk Cardiac Centre. Heart failure is a condition that develops after the heart becomes damaged or weakened.
In Jamie’s case, it resulted from a heart defect he was born with. The problem had been corrected by surgery when he was a baby, but in adulthood he started to experience shortness of breath, palpitations, nausea and other symptoms.
For about five years Heather was Jamie’s caregiver as his heart failure grew more debilitating, until they were told the only hope was a heart transplant. Jamie died in 2017 after an unsuccessful transplant.
Today Heather, a social worker, volunteers as a HeartLife Foundation Champion, speaking about her experience. She is a PhD candidate focusing on heart transplant recipients and their caregivers.
She talked to us about the challenges of living with heart failure during the COVID-19 pandemic.
Challenges of heart failure
For Jamie, the anxiety was the biggest thing. He didn't want to be left alone. It was the stress of being physically ill, but then also waiting for the transplant. When he felt a palpitation, for example, he’d wonder: Should I go to the hospital? Is this all in my head? Am I dying?
For me as a caregiver, the biggest challenge was that I kind of became an invisible person. When Jamie was well I did a ton of volunteer work and I was in scrapbook clubs; I read and I travelled. When his health declined, all my time was taken up managing his meds and appointments, personal care tasks and prepping meals. Also, I had to encourage him to keep going when things got tough.
I missed the old me, but you can't really say this stuff out loud or you feel like a horrible person.
Added fears from COVID-19
The COVID-19 pandemic poses a serious threat to people with heart conditions. I am seeing this affect patients and caregivers in various ways.
Fear of the unknown: Especially for people with heart failure and other conditions, they have so many questions. Should I go get blood work done? Is it safe for me to go for a walk? Will I catch the virus? Also many medical procedures – including almost all transplants – have been halted. So for those waiting, there is the fear of not knowing what will happen or when things might be restarted.
For patients, fear of isolation: I spoke with a caregiver whose husband was having symptoms but refusing to go to the hospital because he would have to go without her, since hospitals are not allowing visitors. That’s necessary to keep everyone safe, but hard on both the person and the caregiver.
For caregivers, fear of losing touch: If your loved one is in hospital and you can’t visit it can be hard to stay informed. Phone calls and Skype are a good alternative but not always easy to access.
Tips for managing the new normal
Be good to yourself. A lot of people are putting pressure on themselves to, say, clean out every closet and reorganize the house and maybe write a book too. Especially for those who are living with heart failure or caring for someone, take time to take care of yourself.
Brace yourself for changes at healthcare facilities. At the hospital where I work, when patients come in, the first thing they see is someone in full-fledged protective equipment looking like they're coming from space. Then there are booths and people asking: Do you have a cough? Do you have a fever? It can be an intimidating environment that you need to be ready for.
Keep in touch with your healthcare provider. Even though they might not physically be in the office or hospital, most are available by email or by phone or virtual appointments through telehealth. When people know there's someone they can reach out to, that can decrease a lot of anxiety.
Breathe and stay positive. People with heart issues, or anybody who cares for them, are probably the most resilient, kick-ass people around. Even before the pandemic, many of us were experts in reducing risk. We already stayed away from sick people, washed our hands, carried sanitizer everywhere. You’ve been through a lot already. You can get through this too.