Impact on Work, School, and Finances
Our participants with HF described being forced to make changes at school or work – to take a pause or completely withdraw from programs temporarily or permanently, if needed. Some women changed careers, shifted to lighter duties or moved to part-time work and some who were in school changed the focus of study because of their heart health issues. Some women had supportive employers but others did not – experiencing co-workers or employers who did not understand their condition or why women might need accommodations or time off due to illnesses and appointments. As a result, some women experienced workplace bullying and resentment. Ultimately, many women with heart failure faced the challenge of living on reduced incomes or alternatively, continued to work, despite the risk to their health. Women reliant on government income replacements are vulnerable as these supports are often inadequate to cover medications and cost of living expenses. Women also shared examples of ways to cope with the financial burden through government programs that may be an option for others. While some women experienced great sadness when not able to do the jobs they loved, many found a new sense of purpose and connection by switching careers or volunteering.
Financial Impact of Heart Failure
Lori asks what are people supposed to live on?
Transcript
All throughout work there were times where I’d be at work and I would be exhausted and my head would be falling and I’d be like this isn’t safe but I need money. And that’s another thing; money when it comes to people that have heart failure or cardiac disease […]
Lillian balances the economic impact of not working.
Transcript
But at that point, it meant probably I wouldn’t be able to go back to work. Maybe I wouldn’t be able to afford my living expenses. What does that mean for benefits if I’m on permanent disability rather than on the medical leave that I’m on? That means that, although […]
Susan2 took time off and dipped into savings to make it work.
Transcript
Where I had to be off for a year. And so I lost a school year there. And that was hard, because we’d just been married a couple of years. And you know, finances, we had to take some money back out of our RRSPs, which you get slammed for, […]
Lois had to sell her house to afford retirement.
Transcript
So here’s the story that I’m going to tell you. I had a house over in East York that I sold recently, five years – or four years ago, made a killing. So it hasn’t affected my finances, but it could have. It might have if I hadn’t had the […]
Joanne says out of pocket expenses are still an issue, despite supportive programs for those living in the North.
Transcript
We do have the [provincial] Northern Travel grant that helps out, but it’s, they give you $100 a night for a room, but most rooms in downtown [city], or their hotel rooms, you’re looking at about $300. So, yeah, you have to have the – be able to spend money […]
Costs to Women with Heart Failure
Living with heart failure costs women money as the newer medications are expensive, and not yet on provincial drug plans. Taking these medications requires women to find funding or pay out of pocket, unless they get permission from the government. Likewise, provinces may not cover expenses for surgical procedures done in other provinces.
A nurse told Anne1 about how to get funding for dapagliflozin.
Transcript
The nurse who was overseeing that study asked – she knew I was on Entresto – but she asked, ‘Why aren’t you taken the dapagliflozin?’ And I said, ‘Well, it was a very expensive drug and I can’t afford to take it.’ And she said, ‘Well, they’re covering that now […]
Susan2 talks about finding alternative funding as her benefit coverage is running out.
Transcript
Right now, my retirement fund though runs out about August or September. So I have to carry my medications to the end of the year. But again, social workers and people have helped to say, why don’t you try over here. There’s a program over here, and you know, to […]
Anne2 had to cover her expenses to have surgery in another province.
Transcript
I understood that the [Province] would cover my expenses because there was no congenital surgeon here in [city]. However, by the time I had my surgery, [city] had hired one, so [province] would no longer cover my expenses. I didn’t have a problem finding a place to stay, we stayed […]
Although many women describe lasting trauma and mental health effects of their cardiac experiences, they often have to pay privately for supportive counselling as insurance coverage is often very limited.
Ginette's insurance does not offer sufficient coverage for mental health counselling.
Transcript
I was told that I only had $150 a year of insurance coverage to go see somebody to help me mentally. Really, $150 is one appointment, what am I supposed to do with that? And I talked to some of the ladies in my group and they’re saying, “Yeah same […]
Impact on Work and Employer Reactions
Lori says employers can be unsupportive because people with HF may need flexibility.
Transcript
I know there are employers out there that are not supportive of people and a lot of people with heart failure end up leaving their jobs and doing stuff on their own. They become freelancers or something because they need [unintelligible] – you know in the morning like for me, […]
Susan1 says needing shift accommodations started a workplace bullying situation.
Transcript
They recommended probably it wasn’t wise for me to be doing night shift anymore in the OR. So days were fine, evenings were fine, but the problem with working evenings is we took turns being on call. And so I had a letter from the cardiologist saying that it was […]
Susan1 describes progressive bullying and lack of accommodation to the degree that she launched a Human Rights complaint, which was upheld.
Susan1 shifts career to teaching nursing instead of doing clinical care due to lack of workplace accommodation.
Transcript
One day I picked up the phone and I called the Human Rights Commission. The human rights commission were horrified at the way I had been treated. I was treated like I had a brain transplant, not a heart transplant. And as a result the hospital ended up having to pay […]
Supportive Employers
While some women reported not feeling supported by coworkers or employers, others had a different experience – where employers went above and beyond to accommodate their health needs. Supportive employers were flexible, accommodating, and creative about finding ways to keep women working.
Naomi shares how her employer created a part time position to meet her needs.
Transcript
I just loved my job. I was really excited. So I’m excited to be back now and I’m very very thankful that they have me back even though I left them in a really tough spot 2 years ago but they have been so gracious and they offering me this […]
Anne1 also speaks positively about her boss who supported her by letting her leave work when she became too fatigued to continue.
Transcript
I had told my boss about the strange malady and she was supportive of me doing what I needed to do to work. I would go to work until I was too tired to stay any longer and then I’d transit back home and crawl into bed.
Facing Hard Choices
The loss of ability to work not only impacts income, it can also represent the loss of social community and connection. Several women describe grieving for their lost work life and a sense of lost identity as a result. Some women described choosing a nursing career specifically to allow them to become experts in their own health condition and to help others like them, better understand heart disease.
Lori says 'work was my community'.
Transcript
Work was not only my social life. It was – you know you got to see surgeries. You got to see patients either recover or you cried for the ones who couldn’t recover. You know you got to know everybody like staff, patients, families, families of patients. To me it […]
Lillian is hopeful about life now that her heart is functioning better.
Transcript
Now, I have some hope. Like, I do feel like maybe I’ll go back to work. And I have like an amazing job that I love. So I feel like that’s possible that I’ll go back to work where I didn’t think it was possible before. So life is so […]
Barbara felt replaced in '5 minutes'.
Transcript
Well, I now know that that job that I cried over, because I didn’t want to give it up and I didn’t think that I could leave it and I felt that I was letting my students down, replaced me in five minutes. They didn’t even have a goodbye for […]
Cathy shares her disappointment about having to give up a career that she loved.
Transcript
It changes your life because now I’m a vet- a veteran. I wanted to do 35 years. I’m the one who signed that contract and said you know what I’m ready to go. And I want to be able to choose when I was going to say that’s enough. I’m […]
Tara talks about choosing between a job she loved and having enough money for herself and family.
Transcript
A year has passed and now I’m confronted with going to work and I loved my job. I loved my job. And it gave great joy. And I needed to admit to myself that I didn’t have enough energy full time and to take care of my family at the […]
School
For the women who were students at the time their heart issue was discovered, having to leave school due to illness was something that was very difficult for them and had great impact. Some reported lost opportunities such as not being able to graduate on time or not being able to participate in certain programs. For those who were able to return to school, a sense of pride and accomplishment was evident with some women becoming inspired by their heart issue and as result changed course of study to give back and help others.
Amanda describes dropping out of school due to illness as one of the worst days of her life.
Transcript
I was alone. I was living on my own at the time at university. And I said I can’t keep up anymore. I can’t dedicate myself to my studies and take care of myself anymore. I couldn’t do that. So I withdrew from university in October 2018. And looking back […]
Maya talks about having to leave school and move back home with her parents.
Transcript
I dropped out of school when I was 18. I moved home with my parents. I ended up living with my parents for a lot longer that I wanted too. My undergraduate degree took me 6 years to finish because when I actually received a transplant I had to drop […]
Maya shares her disappointment in not being able to do the things she wanted to do.
Transcript
I was quite depressed because all I wanted to be doing was to be independent and living away from home and it was basically dashed the things that I wanted to be doing. And even when I was more functional for scholarships I was supposed to go to school and […]
Naomi walks about how she felt not graduating with her class.
Transcript
I was supposed to have graduated in April. May – May so I went to my, not my grad. I went to the grad of my year and like I saw some of my friends cross the stage and it was very sad. I was also very sad because I […]
Amanda expresses her pride in finishing her degree and shares the inspiration for more.
Transcript
On a positive note I graduated university. I finally finished the psych degree that I started he story off with. I finished in the spring of 2021 and now since I can’t stay away from school. I am back doing. I’m working towards my second degree right now as a […]
Naomi has decided to switch career paths due to her heart journey.
Transcript
I was in education to become a teacher an elementary school teacher which still gets me every excited because I love kids. I love working with kids and I would love being a teacher but I’m kind of thinking about switching into kinesiology because, don’t get me wrong I still […]