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How my AVR is going so far - six-month anniversary

Nic25 profile image
16 Replies

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

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Nic25
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16 Replies

Glad you are feeling so well Nic. I enjoyed reading that 😊 Very inspirational as well. Hope I can be in the same place as you this time next year ⌚Keep up the good work and keep posting!

Robinangel profile image
Robinangel

Thanks Nic. I'm writing this from hospital having just had my valve replacement op earlier this week. I read a lot of your posts in the run up to it and could identify so much with what you were saying. Just didnt feel able to contribute until now. How you explained things has been really really helpful and I am glad I saw this tonight so I could say thank you. I will do some updates of my own once I get home and back towards a more even keel!

I will say that although sore and tired (never saw that coming!), a little bit scared as things are bedding in and everything is so new (and not quite as people want it re my heart rate) I feel far better on every level than I had expected to at this stage. I have had the Inspiris Resilia valve fitted and will tell more of my tale and background to being here tonight in due course.

Nic25 profile image
Nic25 in reply to Robinangel

Wow Robinangel, impressed you're posting at all! So glad you're out the other side and recovering - it's early days yet but hopefully onwards and upwards for you. Good luck with getting on the mend and hopefully getting home soon. And thank you for your kind words - it means a lot you found my musings helpful. I found this site in a panic last summer and everyone was so helpful so I kind of wanted to do the same when back I could. But so glad it's all gone well for you and yes do keep us posted on how you're doing when you feel up to it. Welcome to the zipper club too I guess! Nic x

Robinangel profile image
Robinangel in reply to Nic25

Cheers Nic! I will post an update shortly. All going well so far and I have to say, your helpful and calmly reassuring posts helped me enormously, so thank you for that!

dunestar profile image
dunestar

Hello Nic25. My condition is different to yours but I can very much relate to what you say. There's the medical side of things but the psychological aspects are just as important. For both I think the passing of time is important. As time goes on I learn more about my condition and how it's affecting my psychological well being, so that helps. I do think as well that once you are over the initial trauma you value life more and are grateful for each day that comes.

Nic25 profile image
Nic25 in reply to dunestar

Thanks dunestar, all very good points made. Hope things continue OK for you too.

Nic x

OttoK profile image
OttoK

Dear Nic25,

What a useful essay that was. Many thanks. I am now at 3-months after AVR plus double bypass. Just started my rehab, which I think will be great. I have many of the same worries, anxieties etc as in your narrative. But I am feeling I a bit better and (see discussion in these pages) and blaming the pills for giving me some bad symptoms.

I am 74 so have collected coping strategies over the years and you obviously have too such as "light at the end of the tunnel" and "staying strong". We need to admit there are "good days and bad days". A tip for a bad day is just do ONE thing: eg phone a friend, empty the dishwasher, read newspaper, short walk. Keep the narrative coming ... anything about pills is good.

Cheers,

Otto

Nic25 profile image
Nic25 in reply to OttoK

Thanks Otto, that's a really good suggestion. As someone who lives by making lists (even sometimes putting things down I have already done so I can then just tick them off) that'll definitely be a strategy I'll try!

Yes when I was in the first 4-6 weeks there were days when, because of the fog of fatigue, you just had to accept you needed to listen to your body and do nothing that day except sleep and mend. But hard to do or accept.

Good luck with the rehab (or puffing round a room as I used to call it) and hope you're recovery continues to be positive.

Nic x

Lamsie profile image
Lamsie

Wow you are so inspirational so glad things are going so well! I feel so much better having read your post - thank you x

Nic25 profile image
Nic25 in reply to Lamsie

Hey Lamsie. Thank you! So glad it proved useful/helpful. Really appreciated as that's what I'm trying to achieve in my own small way. I try my best! And how are you doing now? Nic x

RoyM profile image
RoyM

Good post Nic from someone waiting for an AVR and replacement of my 4.8cm ascending Aorta. Very positive. Cheers Roy

Nic25 profile image
Nic25 in reply to RoyM

Thanks Roy. And good luck yourself. The waiting/being in limbo really is the worst. Nic x

Cottagegardener profile image
Cottagegardener

A good honest post Nic. Keep them coming!

Nic25 profile image
Nic25 in reply to Cottagegardener

Thank you!

Zena166 profile image
Zena166

Thank you Nic. A great read and so poignant in terms of emotional response especially important to share so that people know it’s normal to have such a wide range of feelings as well as tears. Take care Nic and hope your recovery continues to progress. Stay strong and positive. Zena x

Nic25 profile image
Nic25 in reply to Zena166

Thank you Zena. That's really appreciated. Hope the same of course for you too. Nic x

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