Diagnosis of Heart Failure (HF)

The term ‘heart failure’ (HF) was not always used when women were given a diagnosis – doctors often used other terms such as ‘weak heart’, heart ‘dysfunction’ or heart ‘issue’, so that some women we spoke to did not always know if they had a diagnosis of HF. Other women said they were shocked when they found out later or were told by others that they had HF. Using other terms for HF caused confusion about the diagnosis, which was compounded by women getting very little information about what the diagnosis meant.  While some women described family doctors or nurse practitioners taking time to explain what HF meant and how it might affect their lives, others expressed frustration about the lack of information provided about the condition. Consequently, some women reacted to the diagnosis with fear, confusion, and a lack of trust in their health care providers, with some experiencing significant mental health challenges [see our Mental Health & Emotional Support page]. 

The length of time it took to get diagnosed with HF was often connected to the circumstances that caused the heart condition. Some women were diagnosed immediately following a sudden event, whereas the journey for others took much longer, lasting months and years.  Some women made multiple trips to family doctors, emergency rooms and specialists and were often misdiagnosed, prescribed medications that were not needed or dismissed before receiving an accurate diagnosis of heart failure.

 

Terminology Confusion

The variation in terms used by healthcare providers caused confusion and lack of clarity for several women around the time of diagnosis. Sharon1 said “Nobody ever said that. I mean they know something doesn’t- isn’t working properly” when asked if anyone told her that she has HF. Ginette responded “No. I couldn’t get it, they wouldn’t tell me. I just know that I had a heart attack”. Others such as Tara and Louise were caught completely off-guard when they discovered they had a diagnosis of HF.

Some women were not given any explanation for possible causes of HF and were left in shock, not knowing if HF was treatable, a death sentence or why this had happened to them. Lillian says “I got the diagnosis in June. I couldn’t really comprehend how bad it was” but later, in July a doctor explained “what the ejection fraction was, and that my heart was working at like half the capacity. And that means severe pump dysfunction. No one ever actually said heart failure – they just talk about it in the pump dysfunction category.”

 

What causes heart failure?

Heart failure (HF) can result from many different causes as illustrated by the women that we spoke to. Some women came from families with strong histories of heart disease or had pre-existing illnesses that put them at risk to develop HF such as chronic obstructive pulmonary disease (COPD) or giant cell arteritis (also known as temporal arteritis – a condition characterized by inflammation of the blood cells). Others developed HF following cancer treatment where chemotherapy can cause heart damage. Some women had damaged hearts as a result of heart attacks or long-standing heart problems. And finally, some women had no idea what caused their heart issues but were informed that viral illnesses can cause HF. Ronda says “to this day, I’m not sure what caused that. I mean, they say that a virus attacked my heart. But I talk about that in my book – how I was bitten badly by a stray cat the year before and my mom always believed that that’s what caused this. But we’ll probably never know. I mean it’s just one of those things.” Finding out the cause of their HF inspires some women to join research projects or seek genetic testing.

 

Information about what HF means?

Many women commented that they had no understanding what a diagnosis of HF meant in terms of how to live their lives. In some cases, a healthcare provider (nurse or doctor, for example) explained what they could expect, in terms of the impact on their lives and how medications and medical management would support them. Some women attended cardiac rehabilitation programs that offered more in-depth information and support. However, many other women that we spoke to did not understand the implications and learned by trial and error and/or by searching out information on their own.

 

Reactions to Heart Failure Diagnosis

Fear and shock were common initial reactions to the diagnosis of HF. Louise said that the diagnosis “kind of blew me up”. Our women expressed fear about the progressive nature of the illness or the possibility of death, but also the fear of leaving their families and children behind. Some women had to stop working and their reduced physical abilities caused them sadness. For others, the uncertainty and losses triggered anxiety and depression. Barbara described the day of her diagnosis as “the sorriest day of my life. I cried like a baby, and I was pretty sure that I would have no value after that.”

But Anne1 later describes her attitude change as she realized she had to learn to cope – “you’re not getting anywhere with it, so buck up and get on with it. As my cousin said to me, ‘When life gives you lemons, what do you do? You make lemonade.’”

 

Time to Get Diagnosis

The time to get a diagnosis was quicker for some women than others. Those who were already admitted to hospital got the diagnosis of heart failure quickly through routine testing, without having to request it. Some women were tested because members of their families had died of heart problems. However, other women with more gradually developing symptoms sought help from family doctors or emergency departments and experienced much longer waits – some were misdiagnosed while others were ignored.