Finding Information & Cardiac Rehab

Women told us that they wanted information about their heart, their condition and what might have caused it, what risks they face in the future and how to live a healthy life, moving forward. Trusted information on these topics helped women cope with worries and fears and helped them take control of their recovery process. Cardiologists and family doctors were usually the primary source of initial diagnostic information; they often explained HF diagnosis to the women we spoke with and discussed potential causes and future treatment plans. However, some women found these discussions too brief and limited, making it difficult to get answers to their questions and to find relevant information. Many women turned to their own networks to look for information and support and searched the internet to locate information about heart failure and about support groups. [See our page on Finding Support]. Several women spoke about how cardiac rehabilitation programs in particular were very helpful, offering formal patient education. Other women became volunteers with cardiac support and research organizations as a way to get more information, but also to contribute knowledge and support for other women with heart disease.  

Having grown up with heart problems, Lori became a nurse to help other heart patients who were afraid and needed a bit more information to understand their condition. “They didn’t quite understand it and they just – they needed a little bit more to help them understand about their heart failure, about their heart issues. And so I wanted to become a nurse because of that and because of all the healthcare staff that looked after me.”

 

Searching for Answers

We spoke to women who wanted to understand the causes of their heart condition so that they could protect their children or themselves against future risks. Some wanted to understand things at a very detailed level so that they could advocate for care and treatment that best suited them. Jennifer wanted to know if she could pass on a genetic type of cardiomyopathy to her children so requested genetic testing:

And I guess fortunately, he decided that all of my results and my background … made me not qualify on the BC genetic, I don’t know the, the factors that you need to be tested for genetic based cardiomyopathy. And I was kind of disappointed about that because I, you know, because I have a keen interest in these new treatments and then research. But it kind of means that I likely have I probably don’t have a genetic type of cardiomyopathy. So, I can’t luckily have provided that gene to my children, which was a big concern for me.”

Ginette needs more information about how to live with heart failure.

Transcript

I want to know what I went through. What is it that happened to me and why, if you can. I know sometimes you cannot but, you know, do I need to eat, of course I need to eat better but what would help me? What would, what should I […]

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Jennifer needs more information about why.

Transcript

But for whatever reason, it has happened. The best I say guess, guess of why I have heart cardiomyopathy was that I got it through a virus in my past. And my heart disease probably caused my stroke. But they can’t say for sure if that was true. So, it’s […]

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Sources of Information

During our interviews, women shared how they have been resourceful in finding information, working through local doctors, hospitals, in addition to online information and support groups such as HeartLife.

Ronda uses different sources of information.

Written testimony

I get a lot of my information just from local doctors. When this happened, I was given lots of paperwork and stuff to take home and read. And I have a good rapport with them at the hospital and I do my own research of course. And online there’s groups there’s heart related groups with other people with ICDs.

Kim credits a hospital resource platform for helping her manage her heart failure.

Transcript

They have really good resources there for people. When I heard about CHF (Congestive Heart Failure) and I had to do a different diet and blah blah blah I was like I have no idea about any of this. So, I started watching the videos that were there and they […]

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Barbara journals her symptoms daily and then discusses with her doctor to learn.

Transcript

I went to my cardiologist. You know I – one of the things that I was warned about at the very beginning was not to Google it, right? [Sighs] I don’t know; that’s kind of a plus and a minus, right? When I first had COPD or when I was […]

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Cardiac Rehabilitation Programs – Intervention and Information

About half of the women that we spoke to attended some form of formal cardiac rehabilitation program, offering information, intervention and some support. Some women were very strong advocates, like Lois, who felt a referral to cardiac rehab should be “automatic” if there is heart failure diagnosis. Women had favourable comments about what they learned and their improved abilities afterward. The cardiac rehabilitation programs often included heart education, diet, exercise, pacing and monitoring symptoms during activities, but did not always offer information or support services to manage anxiety and stress. Some women expressed concerns about the appropriateness and variability of content and access.

Barbara found respiratory rehab to be fabulous.

Transcript

I spent a month in ICU. I had been intubated and put into a coma. After a month I was released to respiratory rehab. Now respiratory rehab is probably the best thing that you could ever do for yourself, whether you go into cardiac rehab or respiratory rehab, rehab is […]

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Lois talks about the content of her cardiac rehab program.

Transcript

During the program they teach you a lot of things. They talk to you about – they teach you about heart failure, they teach you nutrition, they do cardiac discussions. A lot of it – most of it is interactive and then we do exercises to some degree, what – […]

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Anne1 regained her strength and confidence so that she could 'push on'.

Transcript

… the people when I went to the Heart Function clinic – not the clinic, the rehab educational thing – I went there for, I think it was two months that was their program. Then, again I was cautious at the beginning, because it was only three months after my […]

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Barbara talks about diet, exercise, and keeping positive.

Transcript

I quit smoking right away. I attended rehab within a month. I started to exercise and used my breath properly, right, and I started to recognize when my heart was beating too hard when – because as soon as my heart starts beating too hard, I can feel it in […]

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Lillian also spoke positively about her rehab experience but said “What I’ve heard from Canadian women with heart conditions is that cardiac rehab varies greatly from place to place. Here – you can have it for three months and then that’s it. It’s not based on evidence of what works – it’s based on how much resources they have available and supply and demand.” Her cardiac rehab program was time-limited and did not offer mental health support or dietary counselling with a registered dietician.

Lillian talks about a kinesiologist providing information and support.

Transcript

The other person that has been helpful for me is the kinesiologist from the cardiac rehab. The cardiologist referred me to cardiac rehab. And I got in fairly quickly, into that. She has been good at giving me more information about HF. The rest of the things that the cardiac […]

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No One was Like Me

Several women commented on the fact that their cardiac programs did not seem tailored or responsive to the needs of younger women. Lois, Jennifer, Tara and Susan2 commented that most other participants in their rehab programs were much older. Susan2 said “no one was like me” and Tara said she felt ‘unseen’ and as though there was no support for the concerns of younger women.

Stevie feels like the resources were not applicable to her situation.

Transcript

I did ask later on, and they said they didn’t really have anything like that. They gave me some like books and stuff. But it was related to people older than I am. I reached out to heart failure to see if there’s any people that were around my age […]

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Lois notices few women in a cardiac rehabilitation program.

Transcript

I really did have to advocate because the cardiologist at [urban hospital], she was not necessarily – I can’t say she wasn’t in favour, but I really had to push my family doctor and I heard that from the cardiac rehab people that that was not unusual. As I said […]

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Jennifer talks about how rehab could be improved for younger women.

Transcript

One was the fact that I was 43 when my heart disease was discovered, I felt like the majority of for instance, cardiac rehab was geared for older people. And I believed that the doctors and nurses, they were used to dealing with older people than myself. And I felt […]

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Tara 'felt unseen' in a cardiac rehab program, until she located a specific SCAD program.

Transcript

I started going to a cardiac rehab class and I couldn’t do what these other people were doing. And I didn’t see myself in that class. They were all probably in their 70s and 80s, and I was getting taught on smoking cessation programmes and none of that related to […]

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Lack of Access to Rehab

Limited access to rehabilitation programs, particularly during the pandemic, was also raised by some of the women. Lois noted that she had to “really push” her physicians to refer her to cardiac rehab and once there, noticed there were only a few other women, or that they did not ‘stick around’ in the program. Others had trouble finding programs that would accept them.

Susan2 talks about difficulties locating and accessing cardiac rehab.

Transcript

Well, they basically told me that I needed to have a rehab program. So I came back home and I started calling around the area, and nobody had rehab program for heart muscle disease. They would take everybody with coronary artery disease and it was a walking program, but they […]

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Stevie speaks about cardiac rehab being closed in the pandemic.

Transcript

I tried to get into cardiac rehab after, but because we were in the midst of a pandemic, it was closed, so I could not attend cardiac rehab. So I just was doing nothing. I had very severe mental health issues after that. I was trying to get into exercise. […]

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Dido is still waiting for cardiac rehab.

Transcript

So, I guess normally the protocol is if you’re diagnosed with heart failure, you have any sort of critical cardiac incident, they want you to get into cardiac rehab ASAP. You get access to the dietitians and the physiotherapist and the cardiac rehab nurses, and you learn about your diagnosis. […]

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Last updated: 2024-08