The Problem with Not Talking about Heart Failure

Heart failure isn’t a one-time problem. Rob Obey explores the importance of keeping up with medical advice and talking openly about heart-related health.

The problem with heart failure is we don't talk about it enough.

Heart failure lurks in the background. It's quiet, and if untreated, it's 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 recently, my health took an unexpected turn for the worse.

I won't go into all the details, but this was only 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 realize 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.

On 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 with the 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 keep up with its management.

There are things you can do to help yourself:

• Stay physically active as much as possible.
• Take light exercises like walking or swimming.
• Eat a healthy diet, and avoid foods high in salt and sugar.
• Try to keep your stress levels to a minimum.
• Make time to relax.
• Try meditation or deep breathing exercises.
• Don't fight fatigue. When you need to rest, drop everything and rest.
• Create a sleep routine. Prioritize 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 and treatment of your condition.

Follow the instructions on your medication

For most of us with heart failure, medication is the answer.

Finding the correct medication for you can take time, and side effects or no changes can make us impatient. Even so, persevere! It can change your life.

• Take your heart failure medication as prescribed.
• Report any side effects straight away.
• Stick with it until you find what works for you.
• Use a calendar or alert/alarm system to manage your tablets.

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 recognize, 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 realized 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 symptoms and medications for every medical 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.

My mood after diagnosis tended to fluctuate and then nosedived to permanently “low.” I visited my GP with my wife, Bridget, and got help. 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 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. Taking our pills and then 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.

The individual(s) who have written and created the content in and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen. 

NPS-ALL-NP-00711 FEBRUARY 2023