Heart Failure – The Beginning

John Kinnard kindly agreed to share his story as a patient living with heart failure. We would like to thank John for sharing his inspiring story and over the next few days we’ll be publishing the full story in 3 parts.

8 years ago my life changed forever when I was diagnosed with dilated cardiomyopathy, atrial fibrillation and was found to have a blood clot in my heart. This also meant I was told I had heart failure! Due to advances in medication and devices heart failure is not the death sentence it used to be but it does mean that we are the 1st generation living this heart failure life. And so the 1st chapter is being written on how to make the most of this very different but equally rewarding life. Though I must say even in my time the pace of advancement is mind boggling at times.
It has been some journey which now reaches an important milestone. Almost 5 years after having my CRT-P fitted along with my AV Node ablated which means I am 100% dependent on my device, the countdown has begun to replace this device within the next 2 years. Time to start again and hopefully learn from the mistakes I made after the fitting of my 1st device.

Throughout the last 8 years I have listened to my doctors without really taking in what they tell me, I leave that to my partner Lorna, who I met during this journey as she has same condition. Together we work as a team pushing each other, she understands the medical jargon where as I really have no idea, all I know is I focus on what I can do & push myself to show heart failure will change your life but it doesn’t have to control it.

Without Lorna none of what I do would be possible & that is what I would like people to understand as the countdown begins, I might be good at my managing my condition but that is only possible because of the support I receive from Lorna, family, some work colleagues and my NHS team. Without them trusting & supporting me to know what I can do none of what I do would be possible.

This device change will mean some big decisions & I need to liase closely with my employers both during the build up and aftermath with the aim of returning to my present role physically and mentally prepared. I also need to think about how it will affect my exercise program, will it be as hassle free as my 1st one despite an initial problem with one of my leads becoming unseated! And how will it affect my family who have been so supportive.

I self manage my condition through support from my cardiologist & GP basically by focussing on how I feel. I feel I can work full time so I manage my life to achieve this, I love exercise especially triathlons so again I manage my life to make this possible despite the many side effects of my drugs and condition but maybe this device change is the time to totally review how I manage these. As someone said at start “ treat it as your invisible friend and look after them well ” along with “you can fight it but you will never beat it” wise advise at the start of my journey.

*The opinions expressed are the guests own and do not necessarily reflect the views of the World Health Innovation Summit.

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