Image Credit: Getty Images / Courtney Hale
doctor using stethoscope to check man's chest

Learning to Live with Heart Failure

Reading time | 9 mins

Three years ago, I was diagnosed with heart failure. After months of blood tests, ECGs, an echocardiogram, CT scans, MRI scans and an angiogram I was told I’d “probably” had a heart attack and it had damaged my heart.

My first thought was: I’m sure I’d have known if I’d had a heart attack. 

But apparently, there is such a thing as a silent heart attack and my cardiologist was adamant I’d had one.

Part of me was in denial. I mean, a silent heart attack? Who’s ever heard of that? Part of me was in shock, which is hardly surprising when you’re told your heart is failing. Yet another part of me was scared because I knew very little about heart failure.

My main concern was: AM I GOING TO DIE?

Thankfully, both my cardiologist and heart failure nurse knew this was on my mind. They explained to me that heart failure doesn’t mean my heart has stopped working – that would be cardiac arrest. It means my heart needs help to do its job. With medication to support my heart’s function, a change in lifestyle and a little bit of determination, I could still live for a long time.

I remember them telling me: “Life as you know it will need to change. You will need to learn to live with heart failure.”

I’m not ashamed to say, I shed a tear.

Yet, their calm professionalism gave me confidence. Confidence that my kids would still have a dad and confidence that my wife Bridget would still have a partner.

It also meant I’d still be able to provide Bridget with the daily care she needs and that was important to me.

Heeding their advice, I accepted their diagnosis and came to terms with my new normal. I changed my lifestyle and learnt how to live with heart failure.

Living with heart failure

Over the last three years, I’ve made many changes to the way I live my life. Some small, some not so. Along the way, I’ve learned to incorporate heart failure into daily life.

This is what I want to share with you. Not because I have all the answers – far from it – but because I know a heart failure diagnosis can be a very worrying time.

Below, I have broken down my tips for “Living with heart failure” into five categories:

  1. Heart failure and general health
  2. Heart failure and exercise
  3. Heart failure and diet
  4. Heart failure and stress
  5. Heart failure and happiness

Heart failure and general health

Heart failure is a serious condition in its own right. That said, for me, heart failure interacts with and masks symptoms of other illnesses.

Let me explain.

Three months after being diagnosed with heart failure, I was diagnosed with fibromyalgia. Six months after that, I was diagnosed with kidney cancer. My left kidney was removed which left me with chronic kidney disease.

I was then diagnosed with central and obstructive sleep apnoea and restless leg syndrome.

My kidney cancer diagnosis and subsequent radical nephrectomy were delayed because I had to go through fitness tests to make sure my heart could survive the operation.

Thankfully I survived!

The main symptoms of all these conditions are breathlessness, extreme fatigue and pain. In truth, I never know which condition is triggering the symptoms. Inevitably, heart failure takes the blame because it’s the most serious – especially when I mention chest pain.

I still receive regular monitoring for renal cell carcinoma (kidney cancer), but I’d like to think my cancer is long gone.

At this moment in time, I don’t need surgical intervention for my heart failure. Instead, it’s controlled with heart medication.

Top tip: Make sure you take your medication as prescribed. I know it can be inconvenient but it’s prescribed for a reason, so take it.

I can’t think of a reason why someone would intentionally not take medication prescribed for them. I can, however, understand how you can forget to take your medication.

When I first started taking medication for my heart, quite often I’d forget to take it because it wasn’t part of my routine. Worse still, I’d take it, then forget I had.

I solved this problem with 7-day pill organiser. These are inexpensive pillboxes with days of the week and times of the day written on them. Once a week, I fill the box up with my medication. This means at any given time I know where I’m up to with my medication. 

Incidentally, I was told at my angiogram that I have slight “furring” of the arteries – another way of saying my arteries are narrowing. I have coronary heart disease but not enough to need stents or a heart bypass. Again, I use medication to keep it under control.

There are many medical terms used to explain heart failure. Most of which I do not understand. The one I do understand is the New York Heart Association (NYHA) classification scale.

In simple terms, heart failure is given a classification based on the severity of your symptoms. I was given the classification of NYHA III, which means my symptoms are moderate to severe.

From a practical point of view, falling within the NYHA III category means I get quite breathless and fatigued with minimal exercise.

Heart failure and exercise

It’s a cruel irony that one of the most important things you can do to help yourself is the one thing you’re least able to do – exercise.

However, all is not lost. There is an exercise programme you can do, even while sitting down.

The cardiac rehabilitation programme is essentially supervised exercise and education. It was designed to use light cardio workouts to build up your heart muscle, as well as supplying information to help you understand your condition.

I did it and I can honestly say it helped.

Once you complete the course you can continue at home within your limits. If it’s available in your area I would recommend it.

If attending a structured exercise class is not for you then try to get some form of exercise. I find gentle walking helps, especially on days when I have limited energy. You can even exercise indoors.

The British Heart Foundation is a good resource for tips on how to stay active when living with heart failure.

Top tip: Always speak with your GP, heart failure nurse or cardiologist before starting to exercise. Certain exercises may not be suitable for you and could do more harm than good.

Heart failure and diet

Another thing you can do to help yourself is healthy eating. We should be eating healthy food regardless of medical conditions, but especially if you live with a chronic health condition.

I’ll admit, before my diagnosis my eating habits were terrible. I was probably carrying two stone excess weight and I was a chronic snacker.

Post diagnosis, begrudgingly, I reduced portion sizes, introduced fruit and vegetables into my diet, banned extra salt and tried to keep to three meals a day.

At first, it was hard but I remembered what my heart failure team said:

“With medication to support your hearts function, a change in lifestyle and a little bit of determination, you can live for a long time.”

I persevered and it’s paying off. I haven’t lost a lot of weight, but I do feel healthier. My breathing has improved slightly and my mind feels sharper.

Top tip: If you can, speak with a dietician to help you make better food choices.

I thought I was doing the right thing by eating lots of salad until my potassium level went through the roof. A high potassium level is not good for your heart or kidneys.

Needless to say, I had to curb my intake of salad which did reduce my potassium level. I replaced it with healthy fruit and so far so good.

I found this healthy eating guide on the British Heart Foundation website particularly helpful: BHF Healthy Eating Guide

Heart failure and stress

Heart Failure doesn’t just affect your health. It also has the potential to put a strain on your wealth. What I mean by wealth is your ability to work and earn an income. Worrying about your job, business and money won’t do your heart any good.

Stress is by far the number one enemy of heart failure and you must avoid it at all costs. I know avoiding stress is easier said than done, especially if you have a stressful job.

If that’s the case, you should speak with your employer about changes that can be made to keep your job and maintain your heart health.

If that’s not possible, maybe redeployment to a less stressful position is an option?

Failing that, it could be time for a career change.

I already worked from home alongside my caring responsibilities. I simply had to slow down and match my workload with my energy levels.

I’ve learned to view heart failure, not as a problem but as an opportunity. I recognise that I’m human with limited time. So I may as well use the time I have wisely.

When you have financial commitments the last thing you need is a disruption in your ability to earn. But, if you push your heart too far, the money will be the least of your worries.

I’m not qualified to offer career advice. I would recommend talking with your medical team, employer and family to see what’s best for you and your long-term health.

If you are worried about your job, have a look at this information Work and Heart Conditions

Heart failure and happiness

I can’t imagine ever being happy about heart failure but I have managed to achieve a level of happiness in the circumstances.

I recognise that I, and possibly you, have taken time for granted. I don’t ever remember sitting down to think about my time and how I use it. I was far too busy to think about the concept of time passing.

Heart failure has focused my mind. Suddenly I recognised time is precious and once it’s gone it’s gone forever.

I made a decision not to concentrate on the past or the future. Instead, I chose to concentrate on today. Sometimes I go so far as to only focus on the next ten minutes.

Doing this means I can achieve whatever I want to achieve in a short period of time. These little successes all add up and support my mental health.

Today, I use my time to chat with family, write a few words, listen to the birds, go for a walk, watch the world go by or just sit and be.

Don’t misunderstand me, I have wobbles, I get down, stressed and anxious. But overall, I have many more joyful moments and I’m convinced they keep my mental and physical health stable.

I honestly believe you can reach a level of happiness simply by living in the moment. It’s surprising how calming these little wins are.

Try it, you might surprise yourself.

The takeaway

Managing heart failure isn’t done in one single action. It’s a collection of decisions, changes and actions that get the best results. So in summary:

  • Acceptance is the first step. Time spent on “why me” is time wasted. Once you accept your new reality, it will be much easier to learn to live with it.
  • Take your medication as prescribed and accept help from your medical team. They understand how you’re feeling and will help if they possibly can.
  • Concentrate on things you can control. If you can exercise, do it. If you can change your diet, do it. These two actions alone will yield results now and in the future.
  • Do whatever it takes to reduce stress in your life. Don’t be too proud or stubborn to ask for help, you’ll be surprised how accommodating most people are.
  • Allow yourself to be happy. Seek out and cherish the important things in life. Often, it’s the little things which bring us joy, the things we ordinarily take for granted.

Life is a journey. Heart failure is just another detour on that journey.

NPS-IE-NP-00092 October 2020