How my AVR is going so far - two-month follow-up

[Nic25]

So it has been an interesting week in post-AVR land.

On Tuesday I had my six-week (well technically because of Christmas getting in the way my eight-week) follow-up at Guy's. I had assumed it would be my first proper excursion out of the house since the operation before Christmas but, in fact, I had made a work trip to London the week before. On that occasion, even though it had been fairly relaxed (not too early a start and just a case of listening to a load of presentations) and even though the physical side had been fine, I had felt strangely shaky all day. I guess it is just the whole psychological "venturing out" thing.

What that did mean however was the trip to London this week didn't feel like such a big deal - and a sign of progress, I felt - even though the trains were (again) a mess, which meant I was glad I had chosen the earlier train and so didn't have to rush, even though it was still much tighter than it should have been.

I was surprised (and pleased) how "in and out" it was - height, weight and BP taken, an ECG, seeing the registrar, and that was it - done. I was slightly disappointed it wasn't my surgeon, but only because I only ever met him the once - at the pre-op consultation last summer - because when he came around the ward pre-op I was stuck down at X-ray. So I feel bad I've never had an opportunity properly to thank him for his excellent work, for everything he's given me and my family. Still, I imagine he was in theatre performing more miracles, so you can't argue with that!

The fact it was so straightforward was, of course, good news. The only real issue is that my BP remains high (diastolic especially so) and so I'll be needing a 24-hour BP monitor (had hoped I had been done with those as I find them a complete pain) at some point in the next few weeks while they decide what to do. I'm on the lowest dose possible of Candesartan and so, hopefully, there are options available and room for manoeuvre. It's also possible it's "white coat" hypertension, in that it seems to be lower at home than in hospitals - even though I don't feel especially anxious in hospitals. So all rather curious. But at least they seem to be on the case and so hopefully it will get managed.

Overall I still feel myself to be hugely lucky in that my operation and recovery so far has been so uneventful. By comparison, coincidence of coincidences, in the waiting area I bumped into John, who been in bed opposite me at St Thomas'. He was doing OK, but struggling with post-operative AF and getting his Warfarin levels settled. He's the same age as me pretty much but both during and after his operation has had a much rougher "journey" than me - and all to do with things that seem mostly about chance and luck.

So the result is I have now been discharged from the surgical care, although I'll be back seeing the cardiologist in April and, of course, hoofing up and down to London for the BP monitor. To celebrate this milestone, and as the weather was glorious and very un-February-like, I decided to walk all the way back down the South Bank (stopping for lunch on the way admittedly) to St Thomas' - which was a bit further than I'd remembered and anticipated! I broke my 10,000 steps and then some! But I made it, popped into M&S for a box of nice biscuits and revisited Doulton Ward to say thank you. In some ways it felt a bit of an anti-climax after all that in that the desk was deserted apart from a receptionist, so it was something of a hurried handover, but I hope they got to enjoy them. They all certainly more than deserve the biggest thank you possible after the care they give day-in and day-out and I will be forever indebted to all of them.

Then today I had my first cardiac rehab session. There had been a question mark over whether I would be able to take part because of my BP, but the diastolic (even in a classic "white coat" scenario such as this) kept itself just low enough. So I was in! It was relatively gentle today, mostly assessment, introduction and being shown the ropes of the circuit. But I do still feel stiff tonight and reckon it is going to be a huge help over time, especially as the pace picks up. I've also realised that, irrespective of the heart, balance and co-ordination are going to be things I really need to work on!

Overall, while in some respects it does still feel early days, my sense is that - like the fact the days are finally beginning to feel longer - there are now definite, tangible signs of progress. I'm back working (the fact I predominantly work from home just tapping at a keyboard has helped). I'm back driving, though have only done short journey as yet. I'm (now) starting to get fit (or fitter). We're doing a first weekend away this week. All steps back to "normality".

I know from reading previous posts of this site people often don't feel fully back to normal for months - even a full year - after this sort of procedure, and I am fully expecting that to be the case. My stamina is definitely still not what it was, although it is improving all the time.

But I no longer (for almost the first time I can remember) have aortic stenosis or an aortic aneurysm. I am now longer carrying round like a dark cloud the prospect of (first "one day" and latterly "looming") open heart surgery, as I have been since at least my teens. I know of course I will eventually need a replacement valve but the clinical hope (as the registrar said) is that the new Inspiris valve could last as long as 25 years, though it is as yet a bit of an unknown quantity. But it would of course be great if it did.

It feels like there is a glimpse of something new starting, whether a new chapter or - to misappropriate Winston - at the very least the end of the beginning. There is still the BP to sort out of course but mostly it's now just a case of focusing on fitness, strength and stamina. Building onwards and upwards.

I can't wait.

Best to you all, and hope wherever you are on this journey you're managing to stay well and positive.

Nic xx

[kefalonia1]

Hi Nic, great uplifting post, well done!!! lt took me 18 months after my AVR to regain my confidence. l am now two years down the line and all is well, warfarin is a pain at times but it stops clots and lowers our risk of strokes. lts not where you have been, but how far you have come. Take care and stay positive

[Calliope153]

Thank you so much for this - we who are still on the "one day" stage need hope and reassurance and this post does just that.

[Fredders]

Hi Nic, great to hear everything is going so well. Since they ‘tweaked’ my pacemaker things have been going great. I didn’t get offered any cardio rehab after either of my AVRs but since I went back to work after 12 weeks I was getting a bit of exercise. Have now got an exercise bike so can get in some proper exercising alongside my yoga - although having a cat climb on your back whilst doing some exercises s a bit off-putting!

Take it easy with the driving, I did short journeys to start with as I found it hurt my chest if I tried todo too much, thankfully my husband also drives so we share the driving if going far.

Keep up the good work.

Wendy x