I can’t quite believe that it’s already two years since I received my diagnosis of heart failure, yet in other ways it’s hard to imagine life any other way now. I remember the shock of being told I had this condition and not having a clue what it meant, but I also look back at all I have learnt since and all the changes I’ve made since that day. Yes, there are things I miss about the old me, like my ability to be out socially for more than a couple of hours on an evening before needing to come home and go to sleep. But then I also look at all the new things I’m doing that I really enjoy. Obviously there is the big one, running, which I never thought I’d be doing, and all the health care related services I’ve become involved in (giving something back to the NHS and beyond) but also things I’ve rediscovered like hiking.

Living with heart failure means so many different things to different people. I am very lucky that, apart from a bit of tiredness, I don’t feel substantially different than I did before I was ill, in fact I’d say I feel a hell of a lot better as my fitness and consequently my general well-being has improved. I have, though, met wonderful people over the last couple of years that are not so well as me. Friends who are in need of a heart transplant (more on that in a bit), friends that have implanted devices that jolt their heart back into rhythm if it starts playing up, friends who can’t walk more than a few yards before they need to stop (I know all to well how this feels as it is how I was before I was admitted to hospital), and friends that are end-stage in their journey with heart failure. The one thing we all do have in common though is an ability to push our own worries and concerns aside when someone else is struggling and offer unconditional support to try and help them understand what is happening to them.

I see people who are newly diagnosed asking the same questions I was asking two years ago today and worrying that they will be dismissed or seen as being silly for not knowing the answers. Of course, no question is ever silly if genuinely asked. When you are first diagnosed, why would you have all the answers? I know I certainly didn’t have a clue what heart failure meant when I was lying in that hospital bed. My advice to anyone when faced with a medical diagnosis is ask any and all questions. Don’t feel embarrassed, don’t worry you’ll be dismissed. Ask, and ask again if you don’t understand the answer. Doctors can have the tendency to go all technical when answering queries, but it’s important that we as patients make sure and get them to answer in terms we understand, again especially at the beginning of our journeys; you will learn the jargon quite quickly but even after 2yrs or more you will come across new terms on a regular basis.

Probably the most important thing that helps my journey through heart failure is the support I’ve had from friends and family. Some of those friends are online friends through the Pumping Marvellous Foundation who offer so much to fellow heart failure sufferers (not sure I like that word to be honest). As I mentioned earlier, we all have different experiences which is so important in being able to support each other. The knowledge we have as a group is amazing so generally one of us will be able to relate to what someone is going through. We are not afraid to lay it out bare for each other and also throw so much support behind each other when it’s needed. The other person that is vitally important in helping get on with living well, apart from friends, family and medical teams is me. It’s important for anyone to believe in themselves and push themselves as much as they can (sensibly and within limits laid down by your cardiac team obviously!). Without my commitment to myself to radically change my life I wouldn’t be anywhere near as well as I am now.

So, two years down and looking forward to the third year and beyond. In just over a month I’ll be having my second attempt at Snowdon after the aborted attempt in July (where by brother managed to injure himself even before we got onto the mountain!). I will get to the top this time! November sees me running my second 10K run with the Leeds Abbey Dash where I’ll be trying to beat the 1h 21m time I got on a very hot July day. That leaves 2019, which I plan to be a busy one with a year long fundraiser. I’m looking for ideas of events (which may include a half marathon – not sure yet) that I can take part in. They don’t need to be organised events but they do need to be achievable. I’ thinking runs and walks, and maybe some new things (not swimming, I have the uncanny talent of not moving when I try to swim!). I’m also going to finally get my driving licence which will mean I’ll be able t travel more easily to events.

Finally I mentioned transplants earlier. I have met some wonderful people that have either had heart transplants or are waiting for one (in some cases they have been waiting for a couple of years of more). I’ve also had an old pupil and good friend from Italy have a liver transplant in the last couple of weeks. I’d ask for anyone that isn’t on the organ donation register to sign up now. None of the bits inside us are any use to us when we are gone, but they may go to give many others a new life. It’s seems silly not to really doesn’t it?

https://www.organdonation.nhs.uk/register-to-donate/register-your-details/