How heart failure changed my life
Deborah's testimonial on her heart failure and how it has affected her life
The day that changed my life forever
I’m a 45 year old English woman, married to a Dutch man, and we have a 15 year old daughter. In 2010, we moved to the Netherlands where I worked as a teaching assistant and had a pretty normal life: I loved riding my bicycle, going shopping… I never had major health problems, occasionally I caught a cold but that’s it. I had never considered the possibility of heart failure.
On March 23rd, 2013, I remember waking up with a really strange feeling in my throat, almost as if someone inside was pulling at something… It was something I’d never felt before. As the day went on it got worse, so I decided to seek medical advice. My doctor recommended I take a paracetamol and go home to rest, as it was likely I had the flu.
On the Saturday evening, my state got worse, I started to have a burning feeling in my back and pain in my jaws. I called the doctor again but received a similar recommendation as before. Soon after I started vomiting. My husband was really concerned as he knew something was seriously wrong, so he once again called the doctor to make an appointment. The doctor listened to my chest, put the ECD machine on, and within seconds, it was clear that there was a major problem with my heart. He called an ambulance and the heart unit, and within half an hour, I was in the hospital: I was having a heart attack.
Looking back, these were atypical symptoms of a heart attack. It is really difficult to detect the symptoms of heart attack, as they vary from person to person. The common symptoms are usually chest pain, upper body discomfort, shortness of breath, breaking out in a cold sweat, feeling unusually tired for no reason.1
I always thought that a heart attack would manifest with the typical “pain in the chest”, as seen on TV. But actually, I had none of these “typical” symptoms that would have pointed to an issue with my heart. Instead, I started with the strange feeling in my throat, followed by the burning feeling in my back, jaws and vomiting – strange symptoms for what was originally thought to be the flu.
Following my return home from the hospital, my life changed. It was as if I had aged overnight and went from being 45 to being 90. I still try to do what I can, but it’s not always easy – even the smaller tasks take it out of me: I used to be able to cycle 60 km every day and now I can hardly spend 5 minutes on the bike without getting out of breath or experiencing chest pain.
Going to the supermarket became an exhausting activity for me… even taking a shower is too much from an energy perspective. Making plans with friends is also difficult, I always have to say no as I can’t keep up.
Living with heart failure is to accept the diagnosis. Whilst to start with it was really difficult to understand and accept, once you embrace it and learnt to live with it, you realise you’ve been given a life sentence and not a death sentence
What is heart failure and what does it provoke?
As you have seen, my life changed completely. I did not just have a heart attack, my heart ruptured and was ready to burst, therefore they had to operate. Since then, my heart is fragile and I have heart failure. Most people don’t know what heart failure is and usually confuse it with a heart attack. A heart attack is when the blood flows stops at a part of the heart, damaging the heart muscles. The consequence of this phenomenon can be heart failure, which means that the heart is not pumping enough blood around the body: in other words, the heart cannot keep up with the demands of the body.
In that case, any minimal physical activity is really exhausting. In my case, it took some time getting used to it. Decision making is a way to manage it, having a sense of priorities, and really planning days ahead to know what I need to do and what I can’t do: it’s about accepting and making decisions accordingly.
I really believe that there should be more education, among doctors and the general public, to recognize atypical heart attack symptoms, especially among women. Things might have gone differently if I had been aware of what was happening.
How Pumping Marvellous helped me get through my illness
Since 2014, I am member of Pumping Marvellous – the UK’s patient led Heart Failure charity. It was founded by Nick Hartshorne-Evans, a heart failure patient himself, whose experiences have shaped the Foundation’s goals and principles.
Pumping Marvellous has been a huge source of support for me. I was recently screened for a heart transplant and I am excited to say that I will be put on a transplant list. I will start by going to a cardiac rehab center to get my body up to scratch, and without Pumping Marvellous, I wouldn’t have made it through this experience!
I’ve been highly involved with the charity, regularly around to support other people and offer any advice that I can give and try to make someone else’s life a little bit easier. Through my work, I want to help make people aware of heart failure and offer to others that little bit of support that I unfortunately couldn’t benefit from 3 years ago. In 2015 I was also able to represent Pumping Marvellous at the European Parliament, presenting a heart failure toolkit.
As an active member of the charity, I was recently awarded the Patient Educator Badge Black which is a huge honour and achievement. The award is only handed out 3 times a year – patients put in their votes, depending on how you represent the charity and the work you have put into it.
Important to remember
I believe the most important thing is for everyone to get the same standard of care, and not for it not to be a “lottery” depending on where you are. For example, the care I received in the Netherlands is very different from what I’ve heard about the care offered in England. In my opinion, it should be the same no matter where you are or what country you’re in.
My advice for other people living with heart failure is to accept the diagnosis. Whilst to start with it was really difficult to understand and accept, once you embrace it and learnt to live with it, you realise you’ve been given a life sentence and not a death sentence. If you see it like that, you will better be able to live with it.