My name is Máire and I’m a self-employed mother of three, living in Dublin, Ireland. I’m 39 and I’m married to John, a teacher and writer, who is 42.
We’re a very happy family and our three children Oscar 9, Ruby 6 and Luca, 2 are all healthy vivacious children and they keep us busy. But, like every family, we have our struggles and, one, in particular, is John’s health.
When John was 19 he was involved in a traffic accident and was hospitalised, he contracted MRSA which developed into MRSA endocarditis (an infection of the lining of the heart) and had to have an Aortic Valve replacement. This proved quite difficult and now, 23 years later he has had 3 valve replacements and 4 open heart surgeries.
He takes warfarin on account of the valve, has regular check-ups with his cardiologist and beyond that he has been extremely well and healthy leading a perfectly normal life like any fit healthy 42-year-old.
However, that has started to change. On the 27th August John went out for a cycle and a run that he has been doing for years with no problems and when he came home he was really really breathless, totally exhausted and was saying that it had taken a lot more out of him than usual. He didn’t really bounce back from it properly and over the next few days was still breathless and tired after the slightest activity. So, we called the hospital, as we always would and they said to come in for some tests just to make sure everything was ok. So, last Thursday, as the kids went back to school and our youngest started Montessori, John headed into the hospital for some run of the mill tests.
They couldn’t find anything unusual but his consultant sent him home with a 5-day monitor and also mentioned the possibility that the function of the heart may not be as good as it should be.
He was also prescribed a new medication that would help with the symptoms and was advised to look out for some possible side effects. So, when he came home he did some research and soon found that the medication he had been prescribed was for heart failure.
It was quite a shock to begin with, but I kept saying that maybe they would pick up something on the monitor and that it wasn’t necessarily going to be heart failure, hoping that that would be the case. After the 5 days he went back with the monitor and when he sat down with the consultant he confirmed our fears; the heart was not functioning as it should, it was probably an inevitability considering everything John’s heart has been through, but it was still a shock.
We’ve spent the last 5 days (it feels like 5 months) reading and talking about congestive heart failure, what it is, what it means, asking questions of John’s consultant – who is fantastic, by the way!
And being reassured that heart failure does not mean that he has been handed a death sentence, that the heart doesn’t necessarily have to deteriorate and that, in fact, it could go on as is for 20+ years if there are no other complications.
But things feel very different.
We’ve always known that John’s heart valve was pretty fragile but the heart as a whole had been in good nick. In terms of general health, he’s had a few blips along the way a few procedures here and there but nothing very significant and I think we had come to a point where we were almost complacent (well, I was at least) and felt that the worst was behind us and that we were going to keep on sailing full steam ahead until the shelf life of the current valve approached its end and they’d just give him a new one.
Instead what we have is a reminder of the precariousness of the situation, that his health is actually quite fragile and that we are probably not looking at a life of complete ‘normality’ (as if that exists. But you know what I mean!)
I’ve been assaulted by fears and thoughts of ‘what if’s’ and ‘whens’ and John has had to face the possibility that he may not be around to see our three amazing children grow up and have families of their own and achieve all the things that they dream of. But, these are thoughts that you can only indulge for a very short time or they take over and then they take control.
So, what are we left with?
Well, we are action takers and we have always lived by the philosophy that you do whatever you can so you can be sure that there’s nothing to regret. We’ve started with a very simple review of our day to day lives. One of the consequences of all this is the fact that John won’t have the energy levels that he once had and we have to do our best to preserve the energy he has for the things that he really wants to do. We’re not afraid to ask for help and we’ll call on family and friends to help out with lifts to and from after-school activities, training and football matches.
We’ve done some research into the best diets for heart health and are going to transition to a plant-based diet (we also watched What the Health on Netflix which would push you towards a plant-based diet, heart failure or not) so that will be really interesting (or extremely difficult, who knows!?)
We’ve also got to get on with life as normal, the kids have to be allowed be kids without the worry of their Dad’s health being an issue but they also need to be aware that there is something so that if anything were to happen that they wouldn’t be completely unprepared. I think that’s a big one – what do you tell them? How do you frame it? You don’t want them worried or concerned on a day to day basis but you don’t want it to come like a bolt from the blue either.
And then there’s me.
How do I manage my own fears and anxieties about the possibilities? How do I ensure that we live life to its fullest and make family life as joyful and fun-filled as possible? How do I resist the urge to tell him to stop everything, to sit down, to take a nap, to take time off work, to not be running around with the kids, to not be picking up the toddler, to not eat the chocolate, or not go for the cycle or not go out for pints with his mates. He’s still a 42-year-old man who wants to and has every right to enjoy life and all it has to offer despite this very scary piece of news that we got!
So, that’s where I am right now! I thought I’d start a blog about our transition to a plant-based diet and how it affects John’s condition but apparently, I have one or two other things on my mind!!!! So, who knows where this will go but after writing this first piece I think this will be like my therapy but it will also be a lifestyle piece about how we can all live ‘normal’ (stupid bloody word) lives under not-so-normal circumstances. And maybe it’ll bring some other mums or dads living with similar stories out of the woodwork and we can share our stories and help each other figure it all out.
But for now, I’m ditching meat and going out in the pursuit of delicious plant-based recipes that my meat-loving children won’t gag at the sight of! Wish me luck!