Impact on Daily Life
Women spoke about how heart failure (HF) affected every aspect of their daily lives. Barbara says “HF affects everything you do, every day.” She describes how movement, using the washroom, standing in the kitchen or eating something all influence heart rate. Likewise, other women spoke about how much time caring for yourself takes when you live with a chronic health condition. Tara says my “full-time job is taking care of myself” referring to managing her meds, diet, exercise, monitoring symptoms, following up on appointments and tests, in addition to volunteering and supporting other women with HF.
Along with the time and effort it took to manage daily life with HF, many women talked about experiencing overwhelming fatigue, including reduced physical stamina and energy, that limited their ability to look after themselves and their families at home and in their communities. Difficulties with standing, climbing stairs or walking commonly caused problems when attempting household chores such as laundry, vacuuming, meal preparation, and grocery shopping. At different points along their HF journey, women needed direct assistance with their daily care and routines, where once they were completely independent.
Debbie needs help with cooking and cleaning.
Transcript
I just don’t have anybody saying ‘Well here Debbie, I’ll come over and help you clean’. Nobody did that. Nobody brought me food. That is something I would’ve appreciated. Because you know, like you just – you’re too tired to cook. You’re too tired to do anything right.
Joanne expresses frustration for not being able to do household chores like she used to.
Transcript
Around the house it just gets frustrating because you can’t do the things, simple things. Simple things like vacuuming. Now to do the vacuuming I find, I get, I have to take a break because just even now to this day the sweat will be pouring down my face and […]
Debbie who was once full of energy now finds small tasks exhausting.
Transcript
And how it affects it its you don’t have the energy that you had before. Like I was the kind of person that you know I met let my house get a bit messy and then I’d go on a tornado trip and rearrange it, clean it, move it, right. […]
Ronda finds the loss of driving very difficult.
Written testimony
And I came home and yeah, it was very difficult to accept what was happening, what had happened. Although I was grateful to be here and be alive, it was a new life, and it was not one that I had hoped for. The no driving is very difficult. I ended up not being able to drive for a total of 11 months, because six months after my initial cardiac arrest, that was in February, so six months after that, I was able to drive, but I had a shock in May and then, so that added six months again. And then I had one in July, so that was another six months. So that was a tough year for me, 2014. And, but once I got my driver’s license back, and I could drive again and I got off some medications, I started feeling a lot better and more hopeful.
Several women like Jennifer felt able to adapt to their physical limits – “I have to walk slower and take breaks if we’re doing any hills.” Sharon1 says “I’m slower” but “it’s not an issue”. In other cases, if a woman’s HF prevented a return to work, there were significant impacts for her and her family. For discussion of how HF impacts a woman’s work or school life and her finances, see our page on the Impact on Work, School, and Finances.
Changes to Diet and Exercise
The constant need to monitor sodium and fluid intake made food choices, meal preparation, grocery shopping and eating out in restaurants an all-consuming focus for the women we spoke with. Kim says that weighing herself every day to see if fluid retention is increasing “has made me very weight conscious”. Jenny says “now I weigh myself every day, and that’s super fun for the girl brain”, alluding to the struggle many women have with body image.
Many women discussed how socializing out at a restaurant with friends or family meant researching the sodium levels of the menu to determine which foods were healthy. And with frequent trips to the bathroom required due to diuretics, they needed to be sure that there were washrooms nearby wherever they went.
Shelly describes what it is like to have to really watch what she eats when going to restaurants.
Transcript
Like I couldn’t have more that 5% sodium in anything I ate. I mean I did sometimes but not all the time. So it makes it really hard when you go to restaurant with your friends and stuff. Because nowadays if restaurants … if it’s a chain it has to […]
Maya's job at a summer camp resulted in fluid retention.
Transcript
I went to work as a camp counsellor overnight camp and the food there is terrible. So I came home completely fluid overloaded, not knowing what was going on – actually trying to avoid it completely – just not acknowledging that there was anything wrong with me. But my mom […]
For the women who participated in this study, it was common to have given up or reduced their involvement in sports, regular exercise, social or travel activities as they once did. They were not physically able to manage the same way. Some shared their fears and uncertainties about whether they should participate and wanted more guidance and support.
Stevie went from being an athlete all her life to struggling to do minimal exercise.
Transcript
I was very athletic person in sports before this happened. I played hockey my entire life since I was 4. And I played baseball in the summers and hockey most summers as well. And that all of that stopped a) because of COVID and then b) because of my heart […]
Choices About Children
Some women with HF talked about being forced to make profound life choices as result of their condition, such as not having children. Some women were advised not to have children to avoid passing on a genetic cardiac problem. Susan2 said “I was also told during the early years that of course I couldn’t have children. I couldn’t carry children, a baby, with the issues of the heart. So that put the family thing and the fact that I would not have children as far as genetic issues, on the backburner.”
Susan1 made her own choice to not have children.
Transcript
And I think earlier, prior to that I had also made the decision when I was 24, around the time that I was told that I had cardiomyopathy too based on that original cardiac cath that you know, it’s hereditary. Dominant recessive gene, 50% chance of passing it on. Plus […]
Stevie was told she probably would not be able to have children.
Transcript
And then I had following checkups where they told me my life would never look the same. They said that I probably wouldn’t be able to have children, and if and when I wanted to try, they could take me through those steps. But they weren’t really sounding positive about […]
Adapting and Finding New Ways
Despite these challenges many of the women expressed gratitude for the things they could do such as travel and other activities, some new, and gave thanks to the medical treatments that allowed them to continue living life. Anne1 says “I don’t know if it’s from the ferritin infusions or the Entresto but one of those, maybe both of those, have given me a real new lease on life.”
Lise made modifications to her activities to continue living life to the fullest.
Transcript
I just need to live my life. Then you learn how to work with your limitations. Like I didn’t give up my traveling. I just made sure that I traveled that there was an elevator there or that our room was on the ground floor. I made sure I always […]