Diagnosed with Heart Failure, Am I Going to Die?

A few months ago, I was diagnosed with Heart Failure. At first, I wasn’t sure how to feel about it?

I was convinced the Cardiologist had it wrong, I mean, I’m only 52, how can my heart be failing?

Once I accepted the diagnosis, I moved on to what I would think is the next question on most people’s minds “Am I Going to Die and When?”

The first part of the question “Am I Going to Die?” is easy to answer, we’re all going to die eventually. But the second part, the important part, “When Will I Die?” is impossible to answer, even with a diagnosis of Heart Failure.

After much soul-searching, my thoughts moved away from me and I started thinking about the bigger picture, especially how this would affect my family.

Here’s a taster of what I’ve been grappling with:

Who’s going to be there and care for Bridget?
What about my kids, what will life be like for them? Even though they’re older, they’ve still got their whole lives ahead of them and possibly without me.
Will I live to see them get married, will I see my grandkids, who’ll babysit for them, will they need me and I won’t be there?

These questions have been going around in my head for months and I still haven’t answered all of them.

But, there is one thing I do know, I know I can’t waste my days dwelling on them because in the end, living with Heart Failure (for me) is about the here and now!

You might ask, why I’m writing this post? The answer is threefold.

1 – I want to explain my absence from The Bimblers, to explain why I have been very slow responding to emails etc…

2 – I want to add useful Heart Failure resources to the blog and put them in context.

3 – I want to get all of this off my chest (no pun intended) so I can get back to some kind of normality.

What is Heart Failure?

Unless you’re a Cardiologist, when you hear the words “Heart Failure” it’s reasonable to fear the worst. I mean, your heart is failing to do its job and without your heart, you’re in trouble!

The good news is, if there is good news about Heart Failure, it’s a generic term.

What I mean by that, Heart Failure covers a number of heart-related problems or at least that’s my understanding of it.

It would be wrong if I didn’t give you the official definition of Heart Failure so here goes:

From the NHS Website

Heart failure means that the heart is unable to pump blood around the body properly. It usually occurs because the heart has become too weak or stiff.
It’s sometimes called “congestive” heart failure, although this name isn’t widely used nowadays.
Heart failure doesn’t mean your heart has stopped working – it just needs some support to help it work better. It can occur at any age, but is most common in older people.
Heart failure is a long-term condition that tends to get gradually worse over time. It can’t usually be cured, but the symptoms can often be controlled for many years.

Original Source: Heart Failure – NHS

From the British Heart Foundation Website

Having heart failure means that for some reason your heart is not pumping blood around the body as well as it used to.
The most common reason is that your heart muscle has been damaged, for example after a heart attack. It can be very frightening to hear that you or a person close to you has heart failure.

Original Source: Heart Failure – British Heart Foundation

I Have Been Diagnosed with Heart Failure – What Now?

No disrespect to the NHS, but they simply don’t have the time to answer all of my questions.

And, when you receive a life-changing diagnosis, this is a problem, so I turned to the British Heart Foundation (BHF).

Personally, I think, arming yourself with information makes it easier to come to terms with the diagnosis. Therefore, I highly recommend these pages from the BHF website:

Heart Failure – Symptoms, Causes, Treatments and Tests

Living with Heart Failure – British Heart Foundation

Also, because of the BHF, I was introduced to Heart Failure Matters, which in my opinion explains Heart Failure in terms anyone can understand, even me:

Understanding Heart Failure

Living with Heart Failure

Myths and Facts About Heart Failure

Am I Going to Die?

Like it or not, death will happen. The important part, for me anyway, is when?

As I have mentioned, I have no idea when I’ll die. I do know, my chances of an early departure have increased, but it’s still an indeterminate amount of time.

If you read most of the blurb on Google, 5 to 10 years seems to be the figure bandied about.

But, like all things Google, take it with a pinch of salt (another bad pun for heart patients) and only listen to your medical team.

I think this proves that no one really knows how long heart patients have left because we’re all different.

With the right medication, interventions and management, some people with Heart Failure live to a ripe old age, let’s hope I’m one of them!

I’m not going to lie, it’s no fun researching how long (potentially) you’re going to live. It’s unpleasant and plays havoc with your emotions. But, it’s necessary because it helps you put life in perspective.

Life in Perspective

Prior to my diagnosis, I was a nightmare. I could and did wind myself up over the most trivial of things. You name it, I found a problem with it, mostly unfounded I might add, but that didn’t stop me, I still found a way to get all stressed out about it.

I also worried, a lot. You couldn’t tell looking at me on the outside, but on the inside, I’d be freaking out. Needless to say, none of this was good for the auld ticker!!

In one respect, the diagnosis of Heart Failure has been good for me. It’s liberating because I no longer have the luxury of worrying about trivial stuff, I now have perspective and realise I have much bigger issues to deal with.

More importantly, it’s focussed my mind. I now appreciate what matters and what doesn’t. It’s a shame my heart had to malfunction to realise it, but hey ho, at least we got there.

I now cherish every day and try my best not to waste a single moment. I’m slowly coming to terms with my new way of life and I fully intend to enjoy what’s left of it.

Living with Heart Failure

When you’re diagnosed with Heart Failure, generally speaking, you are given a stage. Heart Failure stages are based mainly on your own testimonial and reporting of how you’re feeling and what you can and can’t do.

Heart Failure Stages – NHS

When you’re diagnosed with heart failure, your doctor will usually be able to tell you what stage it is.
The stage describes how severe your heart failure is. It’s usually given as a class from 1 to 4, with 1 being the least severe and 4 being the most severe:

class I – you don’t have any symptoms during normal physical activity
class II – you’re comfortable at rest, but normal physical activity triggers symptoms
class III – you’re comfortable at rest, but minor physical activity triggers symptoms
class IV – you’re unable to carry out any physical activity without discomfort and you may have symptoms even when resting

Knowing the stage of your heart failure will help your doctors decide which treatments they think are best for you.

Original Source: Heart Failure Diagnosis – NHS

I have been classed as Stage 3, but it fluctuates and when the correct dose of medication (for me) is found, I’m hoping to stay on stage 1 or 2.

As you know from these posts:

What is wrong with me, can it really be Fibromyalgia

Fibromyalgia, Kidney Stones and a Heart Attack

Something changed in the summer of 2016, all of a sudden, I struggled to push Bridget’s wheelchair.

I already had an Asthma diagnosis, throw in Fibromyalgia and now Heart Failure, is it any wonder I was struggling?

Because of these other illnesses, living with Heart Failure is a bit confusing because I can never tell what’s causing my symptoms.

Breathlessness and extreme fatigue are typical of Fibromyalgia and Asthma, so regardless, I just have to listen to my body and rest.

I’m still capable of doing all the things I used to, just slower. Frankly, it’s not the end of the world, I’d even say it’s a better way to live and definitely in keeping with our tagline “Living Life in the Slow Lane”.

From a lifestyle point of view, there are many other things I’ve had to change, but the bacon and egg are staying and it’s not up for debate.

I’m not going to offer any lifestyle advice because I’m not the best ambassador for change, instead here are some great resources about “Living with Heart Failure”

British Heart Foundation – Living with Heart Failure

Heart Failure Matters – Living with Heart Failure

What Does it Mean for The Bimblers?

When we came up with the name for the blog, it was supposed to describe the way we travel with me pushing Bridget in her wheelchair. As you know, bimbling means:

Travelling slowly, aimlessly and without purpose

How ironic then that it’s become the only way we can travel. Rest assured, we will continue to travel and we will continue to champion accessible tourism.

It’s a true saying, “out of every adversity come’s a seed of opportunity” and for me, this means we now have a whole new audience to help.

That’s not to say we don’t already attract travellers with heart problems, it just means we’re now more appreciative of the difficulties they face.

So, I Have Been Diagnosed with Heart Failure

In all honesty, it’s not the end of the world. I can’t afford to wallow in self-pity, this body of mine owes me nothing and ironically, it’s given me a different outlook on life.

I’m in no doubt, a diagnosis of Heart Failure is serious. It’s a long-term chronic illness, it’s not curable and it’s life-changing. I refuse to give up, I know it’s not that easy for everyone, but my new life mantra is “while I still can, I will” and I fully intend to live by it.

I’m glad that’s off my chest