Five-year AVR anniversary

[Nic25]

Evening everyone. It's quite a long time since I last posted here, just been getting on with living. But this forum was a huge support when I was in the run-up to and after my AVR in December 2018.

That date is the clue to why I'm posting now, as this month is five years since the dreaded op. And I thought it was just worth marking.

I'm good. Knees still creak. Getting balder. Increasingly Impatient to get the Tories out. Now an empty nester (and fine with it). All that stuff.

But the main point is the heart too is still good. I'm still on 18-month (ish) checks (when they remember) which is a darn site better than every six months. I'm fitter than I was pre op (not that I felt I had any symptoms right up until the realisation post op of 'wow, so this is what it's like for everyone else'). Life is very much back to 'normal' and has been pretty since 6-8 months post op.

So the reason I guess I'm posting here is for everyone who has just been told they need to have the op. Or is (as I was) retreating into dark nights of terrified mortality while they count down the days. Basically, for me, the mental build up was almost worse than the op itself. The terror, the being in limbo, the 'saying goodbye', and just more terror.

Don't get me wrong, the op wasn't fun but, at least in my case, it was very straightforward and without serious complications, as it is for many every day up and down the country. I came home with my new Edwards Inspiris, after almost exactly a week in hospital, sore and weak and tired but much, much more mobile and able than we'd anticipated. To a newly decorated Christmas tree and a flood of tears that finally, after so many years of build-up, I'd made it; it had happened and I was ok. Part two was beginning.

So if I have any message to get across here it is that there is an other side, you will come out the other end; the AVR is not a destination but a starting point. And, I'm sure, you'll be good too in time.

For everyone waiting, or numb after just being told, this then is for you. You will come through this. Good luck and merry Christmas.

Take care

Nic x

[Alisbabas]

Hi Nic,

What a brilliant and thoughtful post, yes I'm in the waiting room and it just makes me feel so much better reading that knowing sometime in the near future I will need an AVR.

I'm really glad you are well.

Take care and have a good Christmas

Ali

X

[Nic25 in reply to Alisbabas]

Good luck Ali. I hope not the literal pre-op waiting room?! But if so, double best wishes! Nic

[Alisbabas in reply to Nic25]

Hi Nic,

No waiting for my valve to become ready for surgery

Thanks

Ali

X

[Leonardo1 in reply to Alisbabas]

Hi Nic and fellow hearties , I too celebrate this weekend 2 years since AvR . I had a tissue valve and tomorrow it’s a toddler .

Like Nic I said - so this is what it’s like ?? Feeling able to walk miles without a puff having energy and vitality !! A complete game changer !!

I try to really live positively since my op I stopped drinking , no caffeine and I already was a veggie , to ensure I don’t ruin this second chance . I also think I owe it to the incredible team who fixed me to make all their training , studying and expertise worthwhile . I can never thank them enough .

And at this time of year I value them and my little tissue valve all the more - happy second birthday little valve and to all you hearties a wonderful Christmas and a healthy happy heart new year .

Ch

[Nic25 in reply to Leonardo1]

Brilliant post Ch. Well done! X

[Hidden in reply to Leonardo1]

Happy Valversary x merry Christmas

[Alison1960]

Well hello again, Nuc. Time flies - 5 years since both you and I went through the adventure that is AVR and it seems like no time. If you remember I was in the same hospital/same valve but just a couple of months ahead of you. We were the ones waiting and worrying about our families and look - we’re here to tell the tale - with no inkling that a global pandemic was on its way! I’m so glad to hear you are doing do well - as am I. We have so much to be grateful for and thanks for posting the above which will give do many other people and families hope when they need it most. Another Merry Christmas!

[Gillph in reply to Alison1960]

Gosh - two of you to steady me.

Happy Christmas to both of you for thinking of us. Gill

[Nic25 in reply to Gillph]

Good luck Gillph!

[Alison1960 in reply to Gillph]

One day you will be the one giving hope and reassurance to the people with all the questions you gave right now. Any time you want to reach out feel free - I’ve been there!!

Merry Christmas (and many more to come.)

[Nic25 in reply to Alison1960]

Lovely to hear from you Alison! So glad you're also doing well and, yes, we were very lucky to be just ahead of the Covid mayhem. Take care and a very merry Christmas to you and your family x

[Hidden in reply to Alison1960]

Merry Christmas happy Valversary

[Coper10]

Great to hear your positive update and glad you are going so well. I will be 3 years post AVR in March, so a bit behind you. As you say, it's a big op and a slow, steady recovery. But all is going well and I have a better appreciation of life and am very thankful for the cardiac team's great care. I still work and like to swim, walk and generally make the most of life. All good wishes to anyone waiting for the operation 🤗

[Ageingfast in reply to Coper10]

Me too. I was a few weeks after you. Pandemic as well.

I believe those going for AVR 2023 have a valve that allows a later TAVi.

My main bad memory was the awful waiting to go to hospital. My main good memory was the wonderful cardiac staff.

My local hospital has really got their follow up act together. I no longer need a consultant, the annual check is supervised by a senior nurse. If all the annual tests show ok then the consultant need not be seen.

Sooty

[Nic25 in reply to Ageingfast]

Well done Sooty, glad to hear things are going so well. Yes I believe even my valve allows for TAVI, depending on its size and your health/circumstances at the time. But I guess I'll find out! Though hopefully not for quite a few years yet x

[Hidden in reply to Ageingfast]

Merry Christmas dear Sooty Im 19 days recovery and beginning to get the hang of it lol

[Ageingfast in reply to Hidden]

I imagine your stitches are out and the scar still looks dramatic. 3 weeks is progress but you need 13 ish to get back to your life. I reckon I felt a little better every day or two. You might wish to read your leaflet to check you are doing the right things. Christmas will be tiresome. No lifting anything heavier than a Half filled kettle. Still the need to do the walkie talkie. A great experience that recovery does happen. A little bit every day.

And the scar will melt away.

Just be careful.And patient.

Sooty

[Hidden in reply to Ageingfast]

Hi Sooty great advice as ever thank you but whats the Walkie Talkie Ive not heard of thatI just walked with husband to village shop and back using walking stick talking all the way lol I was scared I cldnt do it but I did resting on bench bf returning

Slow like a snail

Stick cos balance dodgy

But achieved

Xx

[Ageingfast in reply to Hidden]

I was recommended to walk daily and to chat whilst I walked. As the pandemic was raging, I talked to myself !

Snail pace is OK. Just work gently towards EType snail pace. And walk every day. I could walk my long long garden if I wanted. Go steady.

Sooty

[Nic25 in reply to Coper10]

Great to hear that Coper10, that's really positive x

[Hidden in reply to Coper10]

Happy Valversary Merry Christmas

[Football-Mum]

Hi Nic

Happy Valve-aversary! (I saw it on an American site - too cheesy for us Brits?)

Lovely to read your post as I am 9 months post-op AVR and getting into the swing of life with my mechanical valve. Please tell me the ticking noise dies down/you get used to it as I still can't bear silence and go to sleep listening to podcasts. I'm also finding the fitness thing not as easy as I thought. I had delusions I'd be running marathons by now but 5K is still a struggle. I sound like I'm being negative when actually I'm a positive person; just a couple of niggles really. But I would totally echo your comments to anyone who is waiting for their operation and you shared some lovely insight. Thank you. 😊

[Hidden in reply to Football-Mum]

Merry Christmas im 19 days post op and learning abt pacing oneself, not easy but getting there the worst pain currently is in the skin of my "decollatage" and deep when I cough and the cough lingers a lotBut I will overcome this with time

Walking is still like bambi on ice but trying outdoors again later with husband to cling to lol

[Nic25 in reply to Hidden]

Good luck with it Jessica. Sounds like you're doing great. Yes coughing, sneezing, laughing were all painful. The key is it's not a race - they call it being a 'patient' for a reason - and listening to your body. The thing I remember caught me out was the six weeks of brain fog and total exhaustion. But things do and will improve. Good luck, take it easy and hope you enjoy Christmas x

[Hidden in reply to Nic25]

Thank you Nic x

[Nic25]

Hey Football-mum (and great handle). These things aren't linear and well done to be running at all! I decided I really needed to take up running just this autumn, so you're way ahead of me. In my case it's laziness rather than anything else however. It'll come and it sounds like you're doing great. As I went tissue valve afraid I can't help with advice on the ticking however. But hope things continue as positively for you x

[DinoCat]

Great to hear your positive message, Nic, which I'd also echo from my much more recent (only 1yr) post-AVR Edwards Inspiris perspective! Presumably your regular checks still include echocardiograms? Do the measurement results indicate that there's any 'wear & tear' on the valve so far. The Edwards tracking studies (now at 7 yrs) all still look very positive, fingers crossed! Yes, I also heard (from 2 separate cardiac surgery consultants independently) that the Inspiris valve is a perfect substrate for a TAVI, if necessary in due course! Happy Christmas & a healthy New Year, 2024!

[Nic25 in reply to DinoCat]

Hi DinoCat, ha ha, this is the under-cosh NHS we're talking about, so no there has been nothing to that level of detail! The last 18-month appointment actually happened at 24 months after a lot of chasing. Their plan is then to do an MRI next Easter and probably a phone consultation in the autumn, assuming nothing untoward is thrown up. You sound very on the ball and so good to know on the TAVI front. My uncle had a TAVI in his eighties, when also quite frail, so hopefully that's a good sign for the rest of us! Take care and hope things continue to go well fir you x

[DinoCat in reply to Nic25]

My cardiologist is very good (despite NHS pressures!) & told me that he wanted a repeat echocardiogram some months post-op (by which time the valve should be fully settled in) to re-check the measurements & serve as a 'baseline'. This happened in my case (with a bit of chasing!) & all was fine. He also told me that he wanted another echo scan after a further 1 yr (due in the Spring) but if all is still OK at that stage, I would probably revert to a scan every 5 yrs under NHS protocols. I think there was a thread on this general subject some months ago & although what I've described seemed to be not uncommon, the practice seems to vary quite a bit from Trust to Trust! It definitely pays to keep pressing!

As for the (eventual?) need for a further valve replacement, the latest clinical trials data of the Inspiris Resilia valve is still looking pretty promising at the 7-yr stage:

edwards.com/blog/the-surge/...

[Hidden in reply to DinoCat]

Hi 19 days ago I had a Perimount Magna valve which I was told cld be surmounted in future by Tavi I dont fancy repeating this experience in later life lolSo do my best to look after this one

Merry Christmas

[Desktop54]

Thank you so much for your post. My Sister In Law is having this done next Wednesday and your post was very reassuring. All the best and Happy Christmas.

[Nic25 in reply to Desktop54]

Glad it's helped and very best of luck to her in that case! X

[Hidden in reply to Desktop54]

Give her good luck from me, i had mine 19 days ago all well so far

[Gladiator1951]

Great to hear how you are doing, Nic25. I received an Inspiris Resilia as well but in 2022. Thank you for this upbeat and inspiring post. Merry Christmas!

[Classof1988]

Lovely post, so important to encourage those who come after us. Congratulations to all the 3 years and 5 years anniversaries! From a veteran with 35 years experience of AVR.

[Qualipop]

What a wonderful post. Happy Christmas

[Hidden]

Thank you Nic happy Anniversary, im 19 days post avr op and at the weak wobbly stage, had a few hiccups and a trip overnight to AE rhthym probs but med tweaks helping and can now sleep a bit each night, balance still not great but was like that bf, burst into tears at sight of my decorated Christmas tree yesterday lol but I am a very emotional girl ha haI find it hard to slow down and take things steady but then the zombie feeling comes over and boomp asleep on the sofa or in chair

Looking fwd to Strictly Final tonight but wont be twirling round accompanying them round the living room but will still put on my sequins lol

Merry Christmas

[Nic25 in reply to Hidden]

We'll be voting for Ellie! Enjoy.... x

[Hidden in reply to Nic25]

Us too x

[Dyllibobs]

Fantastic post so encouraging. Thankyou & have a fabulous Christmas x

[Edenowl]

Hi Nic

What a wonderful post. It has really helped me. I was diagnosed last year with mitral valve prolapse and severe regurgitation. This was a completely incidental find and certainly knocked me for six. I had no symptoms and was in total shock. I have spent a year waiting for appointments and not really knowing what’s going on. At last I seen a heart surgeon this week. He was amazing, unfortunately my repair would be complex, he does think he could do it but as I’m fine at present just going to monitor 6 monthly. The thought of a replacement valve has really scared me. I think you have had a different replacement but your post has made me realise how lucky we are that we can be ‘fixed” and life can go on afterwards. Thank you so much. I too am counting the days to the next election 😂

[Nic25 in reply to Edenowl]

So glad it's helped Edenowl and good luck. Yes yours sounds a bit different but the fact they're all over it is positive. And you're right, it's amazing what can be, even the fact - as is often debated on here - that we get a choice of valves! Look after yourself and hope things continue ok x

[Nic25 in reply to Edenowl]

*what can be done

[Weetabixie]

A lovely post, inspiring. Thank you and Merry Christmas to all of you 🥳🎄⛄🎅💕