The Problem with Not Talking about Heart Failure

One of the problems with heart failure is that we don't talk about it enough.

Heart failure lurks in the background. It's quiet, and if untreated, it leads to a slow and steady decline. But, by the time the symptoms become "loud" enough to get our attention, it's often too late.

I found this out the hard way when my health recently took an unexpected turn for the worse.

I won't go into all the details, but this was my second acute phase of heart failure. Trust me, it was a terrifying experience.

And, the worst part is... I probably could've avoided it.

During an acute phase, you end up in a hospital surrounded by medical professionals. Their support and attention are reassuring, and you feel confident about handling whatever heart failure throws at you.

But out in the "real world," it's different. You don't know what's happening inside, and life's other responsibilities haven't gone away. It's too easy to let heart failure fall down the priority list when juggling everything else.

And that's what happened to me. My experience proves how quickly things can go downhill when you're not paying attention.

What upsets me the most is that this deterioration came entirely out of the left field. I thought I was doing well and had heart failure under control.

Symptoms can be sneaky; they creep up on you

Heart failure is your heart's inability to effectively pump blood around your body because of damage or weakness.

Initially, my heart was damaged by a silent heart attack, and I didn't know I'd had it until my symptoms became severe.

As well as not knowing I'd had a heart attack, I certainly didn't think I had heart failure.

Common symptoms of heart failure to look out for:

• Shortness of breath
• Swelling in your legs or abdomen
• Extreme fatigue
• Fluid retention
• Weight gain or loss

I was breathless when I was active, but I put it down to asthma.

I was exhausted and drained, but I linked that to fibromyalgia.

I was gaining weight. Again, I thought inactivity and overeating were causing it.

I realise now that I wasn't aware of the symptoms of heart failure, so I wasn't looking for them.

It's easy to become complacent with heart failure

I've had heart failure for five years, and it's been easy to become complacent about my symptoms.

I think the problem is you adapt and build heart failure into your way of life. "Out of sight, out of mind" can become a dangerous mantra.

I had become complacent - dare I say casual - about any changes to my health.

During my last episode, I waited too long to see my doctor. I ignored the signs assuming nothing serious was happening. Big mistake!

Heart failure can be managed

It's important to remember that heart failure is a well-understood condition. If you catch it early and manage it with proper treatment, you can live a long and happy life.

Managing it is a partnership between you and your doctors, but you must be willing to be proactive. Remember – this is your health, and no doctor will chase you (or even know to chase you) if you don’t actively manage your lifestyle.

This includes:

• Staying physically active as much as possible.
• Following the advice of your doctor and healthcare team and ensuring that you liaise with them often.
• Taking light exercises like walking or swimming.
• Eating a healthy diet, and avoid foods high in salt and sugar.
• Trying to keep your stress levels to a minimum.
• Making time to relax.
• Practicing meditation or deep breathing exercises.
• Not fighting fatigue. When you need to rest, drop everything and rest.
• Creating a healthy sleep routine. Prioritise a good night's sleep over everything else.

Your doctor or nurses may be able to provide specific recommendations for diet, exercise, and relaxation techniques based on the severity your condition and how it is being treated.

Report any changes in symptoms immediately

Please don't do what I did and wait. Please don't do what I did and ignore the changes.

Heart failure deterioration can be hard to recognise, so it's essential to report that something might be off.

Heart failure is a progressive condition that worsens over time. You must report any changes in symptoms, no matter how small.

Keep a “heart failure diary”

When I felt myself becoming ill, I made a list of symptoms on my phone. Thank goodness I did - I’m sure that list helped save my life. When I visited my doctor and read my observations to her, she realised something was seriously wrong and started making plans for a thorough investigation.

I am sure if I didn't have the list, I would have forgotten most of them when I visited the doctor.

And that’s not the only time a list has come in useful. I now have a list of my current/ongoing symptoms for every GP or hospital appointment. You never know when it will come in handy!

I use a combination of my phone’s notebook and a written journal. Not using any myself means I can’t recommend an app – but I’m sure there would be one or more available from your phone store.

Pay attention to your mental health

As you can probably tell, I had a wake-up call that frightened me and focused my mind.

If you have read "How Heart Failure Affected My Mental Health," you'll know I reached out for help and that I thought my mental health was stable. But, on reflection, I think I declared “Success!” too early.

Heart failure is a chronic condition that will be with me forever. I thought I had it under control, but I didn't.

Once again, I was judging my heart failure by my physical symptoms (which I missed). Though my brain was grumbling (and then shouting) for attention and tender loving care, I steadfastly ignored it.

The last few months have left me mentally fragile, and I need to rebuild my confidence in myself and the future.

Stress is the worst thing I need right now, so I'm relearning to live one day at a time. And as heart failure patients, that's all we can do.

There will be good days ahead and possibly some bad. But I am preparing for them so they don't take me by surprise.

I am starting to take my own advice. I am paying much more attention to my physical and mental health symptoms.

If you suffer from heart failure, I encourage you to do the same. Focus on your mental health as well as your physical health.

If you have or are starting a heart failure diary, list your mood, stress and fears. Pay attention to patterns. We all feel down on some days, but if days turn into weeks, it's time to reach out for help.

The takeaway

Heart failure is a long-term condition, not a single event for most of us.

We must pay attention to our physical and mental health. We mustn't fall into the trap of complacency. If something has felt suspiciously "okay" for too long, it's worth shaking yourself out of passive habits and investigating. I've learned how being blasé can have serious repercussions.

So, we must take an active role in managing our heart failure. Just pushing our illness to the back of our minds isn't going to cut it.

If nothing else, I hope my recent experience raises awareness and encourages you to discuss heart failure more often.

NPS-IE-NP-00691 March 2023