Reflections on Identity, Life and Death
Impact on Identity
Our participants shared reflections about the profound effect that heart failure (HF) experiences had on their sense of identity, outlook on life and sense of mortality. Living with a chronic illness such as HF, challenged many women’s perceptions of who they were, particularly if they no longer had the same capabilities, and could not eat, play, socialize or work the same way anymore. Cathy says “I don’t even know myself” and Jennifer felt ‘untethered’, when they experienced a rapid, unexpected change to their heart health. Others said they felt lost following their HF diagnosis. Anne1 spoke about the surprise of heart failure because she had “always been really fit and healthy so it never occurred to me that I could be sick.”
Stevie describes all the changes she has had to adjust to in a short time.
Transcript
A lot happened in a very short period of time, and a lot happened. So in the last three and a half years, I’ve had nine cardiac arrests, almost didn’t make it, ended up making it, got pregnant, had a high-risk pregnancy, gave birth, survived the first six months of […]
Cathy's physical fitness used to define her, before HF.
Transcript
And then my world changed. I used to be a marathon runner and a Spartan fanatic and all those races. The 5K, the 10K all of them. They used to kind of define me. I was the type of person that could go all the way up a mountain without […]
Ginette says she misses 'the old me.'
Transcript
I miss my old me. I miss – I am so serious now, I suck. Like I’m so, so – they tell me I’m boring. And it’s true because I’m so uneducated. I’m so not – like I don’t – I do, I live with fear every day thinking that […]
Barbara was sure she'd have no value if she had to quit working.
Transcript
So he told me then that I couldn’t work and so I knew I needed a cardiologist and that’s when I saw the cardiologist after one of my visits to the hospital and he said, ‘It’s not quite as bad as what they said it was in the hospital.’ You […]
The women we spoke with who had spent so much time in hospitals, said that it made it easy to forget women that with HF are more than just patients. Susan1 was grateful to staff who remembered that she used to be a nurse.
While awaiting her transplant in ICU, staff gave former nurse Susan1 some work to do.
Transcript
So yeah, I lived in the coronary ICU. It was very different being a patient you know? And I still remember one night there was a code in the ICU. And I’m thinking oh my God. I should be helping. And I realised the humour of it. Here I am […]
New Perspectives and Outlooks on Life
A number of women described changed perspectives and life priorities following a diagnosis of HF. Some sought out new ways to continue living a meaningful life. Some expressed gratitude for their illness as it helped them focus on what is most important to them. Women who underwent transplant, felt a mix of emotions when thinking about the donor and their family – feeling both gratitude and sadness.
Susan1 talked about her reaction to learning she was not eligible for a second heart transplant: “I remember all of the sudden, realizing where my priorities lay. And that is spending time with friends and family, having dinner out, and my vacations… are my top priority. That’s what gives me the most pleasure right?”
Jennifer's life perspective changed following a stroke and heart failure.
Transcript
But they, you know, we all survived, and they’re back to having no, no issues anymore. And, you know, my, my daughter is, both my son and my daughter are a lot more aware about health issues, because they’ve, they’ve lived through it through me, and my daughter is actually […]
Lillian talks about her changed view of life and work.
Transcript
You’d be hard pressed to find anyone who works as hard as I do. So I don’t have to do that now. And there’s no way I’m going to do that now. I thought that the cancer, everybody says, “Oh, it changes your life, and you have a different view […]
Finding New Purpose and Meaning
Several women were not able to return to their former careers, but now use work-related skills to volunteer and advocate for other women with heart disease. Sharon2 calls volunteering to run expressive writing classes for heart patients “an absolutely wow – joyful experience for me.”
Pam volunteers because she needed to be productive.
Transcript
It was a tough slog. That’s why I had to volunteer, I had to do something, I had to use my brain and use my whatever skills I had, I had to be able to do that. I’d always been a numbers person, I’d always been an anally organized person […]
Jennifer found volunteering gave her a new sense of purpose.
Transcript
I used my skills as a lawyer to read the amounts that we had to read and review. And I used my advocacy skills as a lawyer to, you know, I sat at a table with the Chief Scientific Officer of, of India, and the head of Google Health and […]
Lynda describes how she became involved in patient support and advocacy work.
Transcript
So, I just started helping people in the hospital because they needed it. And I told them I didn’t do it for them. I just said, ‘You need to talk to your doctor. Here’s the questions you need to ask. If they say something you don’t understand or they don’t […]
Reflections on Mortality and Death
Many of the women we spoke with about their experience with HF reflected on their own mortality. Some shared powerful stories of near-death experiences. Many can describe ‘dying’ and then being brought back to life as a result of cardiac resuscitation. Women must grapple with advanced care planning decisions including whether to have children and/or how to prepare their own children for their potential death. Heart transplant recipients or those waiting for transplant reflected upon their own mortality and that of the donor. If a person is not eligible, they may be deemed palliative.
Susan1 describes being defibrillated and feeling as though she had 'crossed over'.
Transcript
And I’m laying there and the next thing you know they’re peeling these – they’re peeling open these pads and I’m laying there thinking oh my god those are defibrillator pads. They’re going to shock me, I’m conscious. But I wasn’t conscious. I was out of body and I watched […]
Debbie describes her near-death experience.
Transcript
So, he was – they put in there and I said – they said, ‘What’s happening? What are you feeling?’ And I said, ‘I have intense pressure.’ Intense pressure in my head, my neck and my chest. And I said, ‘My head, my neck and my chest.’ The intense pressure […]
Lynda talks about preparing her family prior to her transplant.
Transcript
I’m like, ‘I might not come out.’ And all the things you do when you’re in heart failure and you’re waiting for something like this – I had a sit-down with my son and I talked to him. And while I was in heart failure I had to, I had […]
Choosing Death
Some women shared the fact that they had contemplated ending their own lives, illustrating the profound pain and distress that living with heart failure can provoke.
Anne1 would like information about MAID (Medical Assistance in Dying).
Transcript
… and I told him that if I don’t, if I’m not able to do everything I want to do, I would like to have my life ended with assistance. And I could tell there was no way he would want to have anything to do with that. And he […]
Lynda wanted to spare her loved ones' pain and worry.
Transcript
And you know, so we got married and, and for me that almost made it worse because I was thinking, ‘Why would he marry me, I’m probably going to die?’ You know? I thought about dying a lot. Not just in the fact that my heart would give out on […]
Difficult Conversations
As caregivers for children, women navigated difficult conversations and decisions to prepare their children for the possibility that they may die. They tried to reassure their kids but also wanted to provide honest information at a level they could understand.
Lois worries about who will look after her son with developmental issues.
Transcript
Well I think my biggest worry is that I’m going to have a heart attack or I’m going to have another episode of heart failure and not be able to manage my son. But certainly people know a lot – as much about him as they – as they can. […]
Tara talks about the difficulty of having conversations with younger children.
Transcript
Several doctors kept telling me, bring your kids in. Which I think was their nudging way of saying, look lady, you’re going to regret this later. But I felt like I knew better. In retrospect I think they have that experience, that they knew. Anyway. Coming home, my daughter in […]
Ginette wonders if she gave her heart problems to her son.
Transcript
Is it hereditary? I don’t know. Should I tell my son to go get checked or? Like I told him anyway, I said, ‘Go‘ … but he’s healthy. He’s active. You know, unlike my generation, he grew up eating good and feeling good. And it’s not about medication it’s about […]