How my AVR is going so far - one mont... - British Heart Fou...

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How my AVR is going so far - one month on!

Nic25 profile image
16 Replies

Hello eveyone, I hope you're having a good weekend. So exactly today a month ago (Dec 13) I was in theatre having my AVR and aneurysm repair. It's been quite a month!

As I've posted before, I feel very lucky that I came through the whole process with so few complications but I just thought I'd update any of you who are interested in how I'm doing at this milestone, or if it's helpful to others going through the same.

Generally things feel like they're going well, I'm pleased to say; I do feel I'm making progress, if slowly. The wound is healing - it's still itchy and very obviously not fully healed (which I wouldn't expect at this point) but everything seems to be going in the right direction.

Although I do still tire easily, I am gradually increasing my activity. I'm now walking most days between a mile and a mile-and-a-quarter so far. Plus, as our house is tall and narrow, over four storeys, doing lots of stairs every day. I'm still going to bed for a proper lie-down nap each afternoon, but gradually this seems to be getting shorter.

I'm down to one dose of paracetamol a day in the evening though I'm not a martyr to the pain and, if need be, will up the dose.

On that, and I suspect like many, I'm still experiencing "down" days; days when I just feel completely washed-out and don't even manage to get out of the house. I'm trying to be philosophical about them and listen to my body and just go with it and accept that some days that's what you need to do.

So I'm hoping this progress continues. My follow-up appointment is still four weeks' away (it's ended up being more like eight weeks rather than six because, I guess, of the Christmas break being in the middle of things) and so I'm hoping I will have improved further from where I am now by then.

I am also hoping to be able to begin easing myself back into work from pretty much the end of this month. I'm lucky in that I mostly work from home (so no commute) at a keyboard, so physical exertion isn't really an issue. I suspect it's more going to be a question of mental tiredness and a lack of concentration and things like that. But as I am self-employed I don't really have a lot of choice financially but to start to pick up the reins again at that point. I am expecting it'll be a case of doing chunks of hours here and there and then having proper breaks, rather than expecting I'll be able to throw myself back in fully straightaway. But I guess we'll have to see.

So, all in all, I'm positive about where I'm at at the moment and how things have gone/are going so far. My main conclusion (as many I know have said previously) is that this is a slow and steady process; you do have to accept you don't get "better" overnight, but so far so good. And the heart function itself does feel much, much better than it was pre-operation, which can't be a bad thing!

While I'm here, however, a few questions if I may to throw out, though I appreciate everyone's recovery is different.

1) Tiredness and stamina. As I say, this is still probably the biggest issue I'm experiencing, and only to be expected at this point. But what did other people find? When did they begin to feel their stamina returning? I'm sort of expecting not to feel fully back to "normal" and still tiring quite easily for a number of months yet, but in terms of, say, managing a full day without a nap or feeling the tiredness "fog" lifting, what have been people's experiences?

2) Lifting. I'm very much trying to stick to the "no more than half a kettle of water" advice, though there have been occasions where I've realised "oh that probably wasn't clever", things like picking up a full and relatively heavy bottle of fizzy water without thinking etc, even though, actually, it's felt fine to do so. So, again, what have people found as their recovery has progressed - have they been able gradually to do more (obviously within reason and being sensible) or has it been a question of sticking rigidly to no lifting for the whole recommended three months? And how about further down the line (and this is something I will aim to ask the surgeon next month too) for instance suitcases on holiday and that sort of thing?

3) Cardiac rehab. I'm finding I may be falling between two stools here in that the hospital (St Thomas's in London) said cardiac rehab would need to be arranged locally via my GP and my GP has said it'd need to be arranged locally via my local hospital (in this case Portsmouth) but my cardiology as well as my surgery has been at Guy's and St Thomas's (because I used to live in London and simply left in place when we moved away). So I have no connection with the Portsmouth hospital - I'm not on their books - and am keen, if anything, to keep any ongoing care/follow-ups at GSTT because I have found its care to be very good so far and see no reason to change as a result.

So what have other people found? How was their cardiac rehab sourced/accessed? And how useful have they found cardiac rehab to be? I'm planning independently to start swimming regularly again once the wound has fully healed and investigate other gym-based options in the hope that I may actually (for the first time in my life!) be able to get fit, or at least fitter.

None of these questions I appreciate are that serious in the wider scheme of things, but I'd be interested to get any perspectives people have. Otherwise, I hope all of you post-AVR are continuing to mend and heal well and progessing, and that this is at least a little bit helpful/reassuring to anyone waiting anxiously pre-AVR!

Happy Sunday....

Nic x

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16 Replies
amhayllar profile image
amhayllar

I found your post interesting. I too am under the care of Guys and St Thomas' where just over a week again i had two stents put in, a right iliac system reconstruction (venous) and left stent after 11 years ago getting two DVT's in my right leg. Also i live near Portsmouth but i asked specifically to be referred to guy and st thomas hospital after my local hospitals inc Southampton hospital too and GP's just labelled me a worrier. Turned out i had things to worry about including a blockage in my right leg. I am grateful to Guy and St Thomas and i have an outpatient app in Feb. I will continue to travel there for appointments as they didnt dismiss me and i know im in the hands of the experts. Take care

Nic25 profile image
Nic25 in reply toamhayllar

Hi Amhayllar. Wow, impressive, and hope things are going ok for you in that case. Interesting! Yes in my case it was less having any opinion (good or bad) about provision locally and more simply about continuity of care. Plus of course recognising that GSTT is a centre of excellence in this stuff! Plus, for me (I'm actually in Gosport) getting to QA in Portsmouth is almost as much of a faff as getting to Waterloo, so a no-brainer really. I certainly can't praise the ongoing care I've had at GSTT over the years highly enough, so why change? But good luck with your recovery and hope things go smoothly for you

Nic x

MichaelJH profile image
MichaelJHHeart Star

Glad to see things are progressing well. I will try and respond more tomorrow as pressed for time today.

I found most people non-commitial about what you could lift as time passed although half a kettle for 12 weeks and then whatever is a clear nonsense. In the end I found a guide and will try to dig out the link again.

My local hospital referred me for a bypass as their cardiology doesn't do procedures more involved than stents and pacemakers. I was referred back to them for rehab but had to chase them. The impression is they get enough internally they don't chase to work! May be wrong but that is how it came across to me. Your GP will have to push although it might be worth a call to see if GST rehab will write to your local rehab setup.

Nic25 profile image
Nic25 in reply toMichaelJH

Thanks Michael. Appreciated.

Nic x

Hi Nic,

Pleased to hear that you recovery is going so well. As I’m a few weeks behind you I can’t help with your questions on tiredness, stamina and lifting.

My cardio rehab is being arranged by the hospital that carried out the procedure, and I’m fortunate that it’s in my home city. I have been told that I should receive a letter in about a week’s time.

Is there any reason why GSTT can’t arrange it? Must be frustrating being passed back and forth.

Keith

Nic25 profile image
Nic25 in reply to

Thanks Keith. Appreciated. And good luck with your recovery too. On cardiac rehab, I'm not too fussed but will make some enquiries! But do keep us posted on how you're doing x

in reply toNic25

Hi Nic,

Just to let you know that I was discharged last Saturday evening, and this morning I received my first call from the cardiac nurse. She said she’d call again next week to discuss cardio rehab! Didn’t expect anything so soon.

Keith.

Nic25 profile image
Nic25 in reply to

Wow that's great news Keith on all counts. So glad you're home and can now focus on recovery. Good luck. I contacted the Portsmouth rehab team directly and they've now been in touch with St Thomas' and so hopefully things will start to move shortly. So all good. Good luck! X

Fredders profile image
Fredders

Hi Nic, good to hear things are progressing well.

In answer to your questions, I started to notice real progression after about eight weeks, although still had the odd days where I felt very tired. I started driving again after six weeks and also started lifting slightly heavier things, although still careful about not lifting anything too heavy. I went back to work after 12 weeks but as I am a secretary it didn’t include carrying anything too heavy, I could manage a couple of reams of paper but not a whole box. The only problem I still have is tensing the muscles in my left chest if I’m doing something like opening a jar, but I think that is because that is where my pacemaker is sited.

As far as rehab is concerned, I never got offered it after either of my ops, and as I was allowed to go back to work part time and slowly increase my hours I didn’t bother chasing it up. Hope you can get something sorted.

Hope your recovery continues to go well.

Wendy x

Nic25 profile image
Nic25 in reply toFredders

Thanks Wendy. That's all really helpful, especially on the tiredness side and the lifting. I guess I'll just see how things develop! Yes I'm imagining I won't be driving until I get the ok (hopefully) at the follow-up which is slightly frustrating but not a massive deal as I can get to most things I need day-to-day without a car. Interesting what you say about rehab. I will follow things up but it's not a massive thing for me. But all really helpful advice. Appreciated. Onwards and hopefully upwards! Nic x

Fredders profile image
Fredders in reply toNic25

Don’t rush to drive and only do short journeys to start with as it still puts a strain on your breastbone xx

Nic25 profile image
Nic25 in reply toFredders

Good point. Thanks!

Alison1960 profile image
Alison1960

Hi Nic

Great to hear you are doing so well. I found the stamina increased without me really noticing over time - I was a bit lazy with the walking some days but found that the more I walked the more progress I made that week even though some days I would be too tired to walk much.

With re-hab - as you know I was in the same position as you. Procedure at St Thomas’s and GP in Sussex. I was referred by gp to my local hospital who got in touch with me to say there was an 11 week wait. I phoned St Thomas’s to say I’d be willing to go there but they didn’t really want to know - said it was my choice to move out of my local area for surgery and said people living near them took priority. Went back to local hospital to ask to go on cancellation list, showed I was eager to get fit and they managed to fit me in pretty quickly. I was encouraged to go to re-hab by cardiac team not just for the exercise - and it’s pretty intense- but also for the emotional support being with lots of people like me who have all had surgery. They were right - it makes a huge difference.

Keep us posted and have a great 2019!

Alison

Nic25 profile image
Nic25

Thanks Alison. Ok wow, that sounds hard work! Yes I'm not really imagining GSTT will be that interested so you're right I'll probably need to push locally. But I'm quite happy to make a pain of myself! With the walking you're absolutely right, I've had some days where it's just not happened. But I guess the main thing is to accept some days will be better than others and just look to make progress when you can. All great advice thanks! Hope you're still recovering well yourself. Nic x

DenHump profile image
DenHump

Hi Nic Im just a few weeks ahead of you, AVR was on 28th November, I started Cardio Rehab last wednesday at Winchester Hospital it was really good and the nurses are so helpful and informative. I have been advised not to swim for 12 weeks so I am doing plenty of walking, managed to build up to between 6-7000 steps per day and lots of resting too!

Denise

Nic25 profile image
Nic25 in reply toDenHump

Thanks Denise. That's really handy to know and glad your recovery is going well. I will sound out Portsmouth and see what they say. Sounds like you're powering ahead on the walking! Yes I'm hoping to return to swimming eventually but as the only stroke I can do is breast stroke (which obviously puts strain on the breast bone) I may need to take some advice I guess! Hope things continue to go well for you. Nic x

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