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.

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.

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.

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.”

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.”