Backstories

Introduction

The women we spoke with shared many different ‘backstories’, each unique in terms of histories and circumstances, about becoming aware of their heart failure. Some women were born with cardiac conditions or had them diagnosed as young children, often coming from families who have a history of heart disease or conditions. Other women experienced dramatic health crises, such as heart attacks or strokes that left them with heart failure. Finally, there were a group of women who had other health conditions that pre-disposed them to developing cardiac complications that can also mask the symptoms. Interestingly, many of the women in this study did not realize until later in their journey that they had heart failure.

Rich personal and family backstories touch upon early symptoms [see our Early Symptoms page] and the diagnosis of heart failure [see our Diagnosis of Heart Failure page]. While some women had explored the potential causes of their heart failure in more detail as part of their backstory, the focus for this module is on women’s experiences of living with heart failure and as such, we do not discuss causes of heart failure in depth.

 

Congenital Heart Disease

Some participants who were born with heart issues – known as congenital heart disease described what it was like to grow up with a heart issue which was for them ‘normal’.

Lori was “born into heart failure” as a result of congenital heart defects. Shelly describes her condition is just a part of who she is: “I just go with the flow. I’ve been congenital my whole life. I’ve had a heart condition my whole life. I just I go see the cardiologist once a year. Its just a part of who I am.”

 

Family History or Genetic Causes

We spoke to women living with heart failure who had lived with heart disease for most of their lives. Some had parents, siblings or other relatives with diagnosed cardiac problems and family members who may have passed away early in life. For these women, confirmation by testing of a genetic link to heart disease was done only after the deaths of several family members. Susan1 shared an emotional story of losing her younger brother to heart disease and an uncle, at which point “they started looking at the family genetics. – I had vector cardiograms, echocardiograms. I – I had everything. And so there was some suspicion that I might have it as well. But the cardiac cath in September of ’78 confirmed it.” Lynda worries about her siblings as “we have been diagnosed with familial rapid coronary artery disease.”

 

Sudden Health Crises

Other women described having no forewarning at all. They described having no family history of heart disease and no awareness of personal risk factors. They experienced sudden health events or crises, such as a stroke, heart attack or cardiac arrest only to discover upon recovery, that they had been left with a damaged heart. Heart failure can sometimes develop quickly after such crises or may evolve more slowly over time.  Several women reported a slow progression of heart failure and first believed they had a flu, cold, or COVID and were not aware that their heart was the underlying cause of their issues. Jennifer had “no traditional risk factors of heart disease or stroke, you know, … I was young, active, didn’t smoke ever in my life. My life was quite stress free you know, for years. And no family history of either.”

 

Diagnosis of Heart Failure Unclear

Like Tara above, other women refer to having ‘cardiac events’, without knowing the specific diagnosis or the implications of the event, leaving them confused about their current state of health. Sharon1 describes having a “heart issue” but says she has not been told that she has heart failure. Joanne said that she was told that her heart was “weak” but was not aware of heart failure. Lynda has a family history of heart disease and developed chest pains that caused her to make several trips to the hospital before “having a heart event, as they called it. I had no idea what it was.”

 

Co-morbid Health Conditions

Heart failure can develop as a result other conditions or as a side-effect of medications. Lillian and Debbie talk about cardiac problems following cancer treatment. Lillian says: “So it was caused either by the chemotherapy or by the Herceptin. And they can’t tell which one because they both were in time as a possible cause between the two MUGA scans [multigated acquisition (MUGA) – a scan of heart and blood flow]. But if it was the Herceptin, there’s a chance of recovery. And if it was the chemotherapy, there’s less chance.”

Others developed heart failure secondary to other chronic health conditions such as chronic obstructive pulmonary disease (COPD), Lupus or Giant Cell Arteritis. Anne1 says: “The general consensus was that the giant cell arteritis had so inflamed the blood vessels of my heart that that was what led to the heart attack. So I left hospital with a badly damaged heart, my ejection volume was 33 percent.”

Heart failure symptoms such as fatigue, shortness of breath, and weakness went undetected. Health care providers were not alerted to the possibility of heart failure because the symptoms were masked by other conditions – making it difficult to detect and discriminate between causes.