Good afternoon everyone, hope you're all having a good weekend and (finally) getting some summer sun. So it was the six-month anniversary of my AVR and aneurysm repair at St Thomas' last week and I thought it worth updating everyone how things are with me, if it's helpful for others.
Essentially I feel very lucky to, physically, feel back to "normal" and, in fact, better than pre- the operation. I'd fully expected that it was going to take the best part of a year for my body to sort itself back out but I actually feel pretty much OK already and that I've come out the other side. Obviously things may always change - and I'll come to that - but, for now, my heart function is good, I'm fitter than I was before (though still wouldn't call myself exactly fit), I've lost about a stone in weight (trousers that couldn't do up before now can and there's now more a bicycle than a car tyre round the middle!) and, all in all, I would say I'm in a good place.
In fact, did 20,000 steps yesterday - not that I meant to but just happened that way, and was pretty stiff when I woke up this morning. But in terms of heart function, it was absolutely fine throughout an afternoon of quite intense walking. So that's all really positive.
That's the physical. There are, however, I'd say still some psychological elements that are going to take time to work through. I still, for example, find myself getting a bit more emotional at anniversaries - daughters' birthdays and so on. Just because I am so grateful still to be here and because it was so, so painful to write "goodbye, be strong" letters in the run-up to the operation - thankfully, of course, now firmly at the bottom of the drawer.
I'm certainly much more aware of - and potentially panicky - about my heart function. If I can feel my heart pounding away if, say, I'm a bit stressed or exerting myself too much it does still send me into worry mode, even though I know, rationally, that nothing has changed from 10 minutes ago and so, in reality, everything must still be OK. I find myself occasionally taking my pulse "just to check" or more frequently than I probably should doing the heart rate thing on my fitbit-style wrist device.
Just on that, I would add that the 10-week cardiac rehab class was really helpful in terms of helping me to deal with this psychological barrier (even if it is still there). It wasn't just the way it kickstarted you physically - although that was important - it was the confidence it gave you to "work" the new valve, to feel that it was OK to push yourself a bit physically and that the elastic band, as it were, wasn't going suddenly to break if you, say, tried to power-walk up a steep hill. You'll probably never stop having a nagging worry, but I found it really did help a lot.
So I would advise for anyone who's recovering from open-heart surgery if you get the option to do cardiac rehab, take it.
There also the nagging "what if" - what if it starts to go wrong, starts leaking, fails generally etc? I guess you never quite "get over" this but it's just the thought you're now relying on something artificial/manmade for something so important - it's always there. Again, rationally, you have to put it to the back of your mind and just get on with life or you'll go a bit mad, but it is nevertheless something there.
Philosophically, too, I accept there's nothing I can do about it - if it happens it happens - and the fact my cardiologist has said she doesn't want to see me again until autumn next year is a vote of confidence that she is confident I won't "need" to see her before then. But, still, you do I find still worry.
I guess what I'm trying to say is, for those of you pre- or post-operation, what I've found is that, yes, the physical recovery is important and, understandably, it's what we all focus on. But don't overlook the emotional/psychological fallout from all this too - especially us men who are maybe not great at connecting with our emotions and stuff like that. Don't suppress or try to bottle it. And, partners, recognise it can or may be an issue even months later, maybe even years later.
The whole emotional and mental build-up to my AVR last December was a massive thing for me. When I finally came home, the first night I was in bits, floods of tears - just a completely outpouring after everything that we'd been through as a family and the fact I was "through". I wouldn't say the mental/emotional/psychological side has been harder to deal with than the physical "journey" - it's not a binary either/or - it's just different; but it is maybe something we need to recognise is part of this whole process.
Having said all that, I am positive about the future. I do feel hugely lucky and grateful, especially to the miracle-working NHS teams. I also realise how lucky I am in terms of my family and partner, who were just great during what was also for them a very traumatic period (and, as one of my daughters admitted to me the other day, she had been in bits herself in the run-up but hadn't wanted to let on, had wanted to be "strong" for me, which really cut me up/made me feel guilty, even though it hadn't exactly been my "fault"!).
So, all in all, six months on, I do feel I am in a good place generally. And if you're (as I was pretty much this time last year) just starting to get your head round the fear, terror and anxiety of being told you'll need to go through open-heart surgery, whatever your condition, do realise there can be light at the end of whatever dark tunnel you may be in right now. You can come out the other side and, with the support of the expertise of the NHS, hopefully will - and stronger. But it is also a bit of a life-changer, and not just physically.
Good luck to everyone and stay strong (mentally and physically)! Happy Sunday to you all.
Nic x
My story (so far)
update on my situation so far
My journey so far
