Tell us a bit about yourself
I live in the West Country and feel very lucky to have been given the chance to be able to continue and maintain an independent and productive life.
I work remotely behind the scenes for a heart failure charity, the Pumping Marvellous Foundation (PMF), where I provide creative assets, digital marketing, manage support and offer advocacy for others. I am very rarely seen without a digital device attached. It is much more than a job. It’s a way of giving back. Ensuring people with heart failure like me receive the best care is extremely rewarding.
I have family within a few miles and live with my superhero dog Roobarb, an eight-year-old Bedlington Whippet who I originally got to help me get fit, as nothing else seemed to be making a difference. Little did I know what would lie ahead…
When did you first know there was something wrong with your heart?
Looking back, I now know some symptoms first presented 20 years ago, but it wasn’t until I had a heart attack 15 years later that I received information about my heart, in spite of my multiple previous queries.
By the end of a work day I used to get swollen ankles and maintaining my weight was always a struggle, as well as extreme tiredness, all of which were attributed to a variety of other causes. Later on, chest pain was misdiagnosed as a pulled muscle. I knew something was wrong, but with existing conditions (e.g. Type 1 diabetes) the red flags were missed by me and my health care team.
Tell us about your diagnosis
It wasn’t until after a serious heart attack (STEMI) in 2012 that I knew my heart was in trouble and had suffered permanent damage. A leaky valve was also identified, a small hole and right-sided heart failure.
I needed coronary artery bypass graft surgery (essentially, a triple heart bypass) which was successful, but unfortunately the procedure lead to lengthy complications. It was quite a battle for me to stay alive and very tough on my remarkable family and friends.
How has heart failure changed your life?
Living with heart failure often means making adjustments and sometimes imposes limitations, but it hasn’t stopped me trying to achieve the best I can. I was working throughout, even in hospital, but it was around 18 months before I was well enough to focus properly, mostly due to the number of surgeries and complications I experienced.
However, there is no way I could return to the career I studied for. Instead, I needed to utilise my remaining strengths, which actually has been incredibly useful and allowed me the flexibility to work around the bad days. As hospital inpatients, I had seen many people struggling with the realities of their new situation. This is why I became involved in the PMF charity: I wanted to tell people to keep going and ensure they had somewhere to go for advice after discharge. I also thought my skills were a good match to help the charity as a whole and in fact, my own experiences proved to be invaluable.
What advice would you give someone who thinks they may have heart failure or who has just been diagnosed?
If you are experiencing fatigue, breathlessness or swollen ankles, do visit your health care professional who, if necessary, can ensure that you receive recommended heart failure treatment as soon as possible. There are other causes of these symptoms, so do stay calm. But it is well worth getting checked out.
If you have been recently diagnosed, find out everything you can about your condition and how you can optimise your new self-care routine. Use the help of your health care team and loved ones.
Remember that heart failure is not the end.
Remember to wear your positive pants.
Remember that you are far from being alone – many others will have similar experiences and you are at the centre of your own heart failure team.
Take time to come to terms with your diagnosis – this will help you to move forward.
Don’t be afraid to ask for help. Talk to your friends and family about your condition.
Anything else you would like to add?
I am reluctant to allow heart failure to define me. On a good day, I would barely mention it, but it can be a test for us all. I will be forever thankful to everyone who has given me so much support. It is a wonderful reward to see others grow on their own heart failure paths too.
I am so proud and thankful to my sister Lucy who accepted the invitation and challenge to join my world for a short time with Parallel Hearts. 25 years ago, we climbed a mountain together in New York and through the Mount Snowdon climb Lucy completed for Parallel Hearts, I feel equally triumphant.