Tips for managing heart failure symptoms:

• Track daily symptoms such as breathlessness, swelling, weight changes, and fatigue
• Weigh yourself at the same time each day and report sudden changes as instructed
• Pace activities and build in rest periods to avoid extreme fatigue
• Sit upright or use extra pillows if shortness of breath worsens when lying flat
• Report frequent dizziness, light-headedness, or near falls to your care team
• Let your provider know if symptoms are interfering with sleep or daily tasks

Managing symptoms is not just about comfort. It can also help protect thinking and energy levels.

Learn More about Symptom Management

Eighteen years is a long time to live with any diagnosis, but especially one that quietly reshapes both the body and the mind. When I was first told I had heart failure at the age of 63, I understood it in practical, almost mechanical terms: a weakened pump, reduced efficiency, medications to compensate. What I did not anticipate—what no chart or clinical explanation fully conveyed—was how profoundly the condition would reverberate through my emotional life and sense of self, even as my cognitive abilities remained largely intact.

Once, cognition and emotion were considered separate, but we now know the two are intertwined: our emotional processes inform our cognitive ones. And for me, the greatest impact of living with heart failure has been emotional.

At 81, I continue to teach and write. I prepare lectures, organize ideas, and engage in the kind of intellectual work that demands clarity and focus. In some ways, cognitive faculties feel like old, well-used instruments—not quite as quick to tune, yet still producing meaningful output. Research on heart failure more often highlights the risk of cognitive decline, the impact of reduced cardiac output, which affects cerebral blood flow. While I’ve read these findings with interest, it’s as though they describe a life I cannot identify with.

My cognitive changes have been subtle—an occasional lapse in recall, a momentary hesitation for a word, or a need for better organization. These small shifts are also consistent with aging, but have not prevented me from sustaining the intellectual identity that has defined my life.

It is my emotional landscape that has been transformed in ways hard to quantify or explain.

Heart failure introduced a constant undercurrent of fragility in my daily life quiet awareness affecting decisions I make daily: how much energy a task requires or how I manage or interpret periods of fatigue. I am more attuned to my body in a way that, although necessary, can challenge my sense of self. I am not quite the person I once was, but rather someone who now negotiates her life with physical limitations.

Even when one remains as active as I continue to do, there are boundaries that I can no longer ignore, and they are more apparent over time. Energy is budgeted; the future is more conditional, and emotional equilibrium and self-concept are altered. I live with a persistent quiet grief, knowing my body no longer offers the same assurances it once did. Heart failure is synonymous with a persistent shift in self-concept.

Perhaps the most significant impact I’ve felt has been a gradual reshaping of self. I have had to redefine what it means to be capable, independent, and productive. I’ve had to learn to rely on my spouse more than I used to. The identity I once took for granted—energetic, independent and physically active– has been forced to include uncertainty, limitation, and adaptation. This isn’t a sudden “Aha!” moment of realization, but an ongoing process, continuing even now.

Heart failure has reframed my sense of time. When I was younger, time felt expansive, almost abstract. Now, it feels more immediate, more tangible. This is not solely a consequence of age; it’s also about living with a condition that invites reflection on mortality. Even the term “heart failure” invites thoughts of mortality. I have to work to ensure that being a heart failure patient does not diminish my engagement with life, despite limitations I once did not possess.

I seek activities that give me energy, mental challenges and, not unimportantly, fun. Writing daily, as I have done for decades, continues to be an important activity. I rely on the Japanese wisdom of “Kokoro”, or “strong hands, strong mind,” even though writing is not considered manual labour!

The emotional impact of heart failure has sharpened my awareness of what matters and, perhaps more importantly, what does not. I have less patience for trivial concerns or busy-ness for the sake of busy-ness.

At the same time, there are moments when the fear or anxiety of heart failure surfaces: a night of restless sleep, an unexpected weekend in hospital when a new defibrillator failed, or any worsening blood test results on my regular medical appointments. These feelings are not constant, but they are part of the landscape.

What strikes me, looking back over these eighteen years, is the asymmetry between the cognitive and emotional effects. While my mind has remained largely steady, the emotional part–my sense of self–has been continually reshaped in ways not always visible to others. These are not things emphasized in clinical discussions, which tend to focus on measurable outcomes. Yet I hold some responsibility for not introducing them into the conversations with my cardiologist. Nonetheless, I believe the emotional aspects in concert with the clinical ones, heart and central to understanding the lived experience of heart failure.

If there is a lesson in this, it may be that the impact of illness cannot be fully captured by cognitive tests or physiological metrics. The emotional dimension—how one feels, adapts, and finds meaning, and, not unimportantly, how one comes to understand an altered self—plays an equally important role.

Yet I would not describe these changes solely in terms of loss. There has also been continuity, resilience, and even a certain quiet enrichment. The ability to continue teaching and writing is, of course, a source of satisfaction, but there is a deeper sense of living with something difficult and still living as fully as I can.

Heart failure, as I have experienced it, is not just a medical condition. It is an ongoing negotiation between body and mind, between limitation and possibility, and between who I was and who I have become. It has asked more of me emotionally than cognitively and has reshaped my sense of self in ways that are both challenging and, at times, unexpectedly illuminating.

At 81, I do not take this lightly. Nor do I take for granted the capacity to reflect on it, to give it form in words, and to continue participating in the intellectual life that has long defined me. If the heart has faltered, the mind—and, in many ways, the spirit—has remained engaged. And perhaps that, in the end, is the most important balance I have been able to maintain.