Approaching 8 weeks post Aortic Surgery - British Heart Fou...

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Approaching 8 weeks post Aortic Surgery

Si1972 profile image
29 Replies

I have had AF for 6 weeks of the 8 weeks of my recovery and have to say I feel worse than I did before the surgery. I am trying to excercise but have limited breathing ability. Climbing up the stairs at home leaves me in a state of looking like I've just sprinted 100m. Walking I get so fatigued my legs are like jelly. I cut the lawn 3 days ago it took me an hour, I just have become so slow. I'm 48 and was fit and strong and now feel very low. Today my scar and the sternum area is extremely painful as 2 days ago I was working on my car for the MOT and spent an hour in the engine. Has anyone had this or suffering anything similar, my journey has been 2 years. I originally had AF and my cardioversion worked and stayed in sinus until 6 weeks ago. I feel very emotional and sometimes aggressive towards my wife. I'm currently in bed today with pain around my scar and fatigue. This is not me, I'm always active, I can't help feeling the operation has failed and the synthetic valve is leaking. My follow up appointment has been cancelled and will take place over the phone in 3 days. I had my procedure done at the Harefield and everything went fine, I was home in 5 days. If anyone can give me some advice it would be sincerely appreciated.

Simon.

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Si1972
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Blackcatsooty profile image
Blackcatsooty

Dear si

I had avr at Harefields sister hospital In Kensington, eight weeks ago. I have been told not to lift anything overtwo kg and certainly not mow the grass. When you get your phone consultation then ask what rehab you should be doing. I had open heart and maybe you had TAVI ? Aches and pains in the neck arms and chest are expected. I believe that depression etc is common although i have escaped the depression myself.

I feel much improved and particularly have improved breathing, thinking more clearly and walking much easier. I am told to do the rehab for 12 weeks.

I hope your consultation gives you answers.

Colin

Si1972 profile image
Si1972 in reply to Blackcatsooty

Hey Colin, I had open heart. In the literature I was given when leaving hospital is said I could do light work at week 8. Its the Atriel Fibrelation that is hindering my recovery as I cannot walk far which then gets me into a state. Thank you for taking the time to reply.

Shar28 profile image
Shar28

Hi Simon, it’s good you’ve had your surgery but disappointing you’re in AF. It sounds as if it’s one step forward and two steps back, which I think is hard to cope with. My husband had his AVR a couple of years ago now but I remember emotions and energy levels being all over the place for quite a while afterwards. From other comments on here I think that’s quite normal. Your body has been through a huge disruption to its “normal” functioning and it takes time for it all to settle. Anaesthetics etc also take an age to recover from fully. So, please don’t be too hard on yourself or expect too much, especially as you’re in AF now. Keep talking with your wife, letting her into how you’re feeling, physically and emotionally and ask her how she’s feeling too. You’re going through this together but from different perspectives so communicating is key.

In respect of overdoing it working on your car - that sounds just like my husband! It was hard for him to know when to attempt things, how much was enough and how much was too much. He found out the hard way sometimes too! From a wife’s perspective I’d suggest for the time-being allowing at least double the time you would normally to achieve tasks, don’t set yourself a specific time or timeframe for doing things ‘cos you won’t always feel up to it despite wanting to and expect to have to rest afterwards for as long as it takes, even if that’s longer than you would like.

Do you keep a note of your blood pressure & heart rate readings each day and of how you’re feeling? Also of what you can do (like walk up stairs) and how your felt during and afterwards. It’s useful because you then have objective data to discuss with your doctors and to look back over for trends or anything unusual as time progresses.

As your review is coming up, it’s useful for you and your wife to write down questions as you think of them. When my husband has an appointment I go with him (or listen to the call on speaker phone these days) and make notes of what the doctor says so we have it for future reference. If you’re not sure what to ask then the BHF website and nurses are good.

Also, as you’ve probably seen, this forum is great if you want to unload, rant, ask for support, share how things are going etc.

I hope what I’ve said is helpful. Best wishes to you and your wife.

Shar.

Si1972 profile image
Si1972 in reply to Shar28

Thank you so very much for your reply.

080311 profile image
080311

Hello Simon

So sorry you are finding it hard going, 8 weeks is a very short time after major surgery, and from your post you have being doing a lot more than you should at 8 weeks. Mowing the lawn and working on your car at 8 weeks, no wonder you feel wiped out.

Emotionally this op really takes a swing at us, I was 20 years older than you when I had my AVR, and I was so cross with my body for letting me down, it never had before.

You say your sternum is sore well working on the garden and car it’s going to object, it’s not fully healed yet remember it’s a broken bone even though we have been wired together it still as to heal. They tell us no lifting anything heavier than a half a kettle of water no arms above our heads. 10-12 weeks.

Please its baby steps, and you will get your life back, but you have to build your stamina back. I am now 72 and 4 years on and my life is good.

You have a long life in front of you, but just at the moment it’s slow careful steps.

I wish you lots of luck stay safe Pauline

Si1972 profile image
Si1972 in reply to 080311

Bless you thank you.

andy110519 profile image
andy110519

Hi Simon,

I had my new valve last May, at 49, and had been fit and healthy (or so I thought) beforehand. I got the kids to mow the grass all last summer, admittedly a manual mower, and did not start work on my Defender for months afterwards because of my chest. I still feel it now if I do too much.

It was a few months afterwards before I could manage a whole day without a lie down and I still don't have the energy levels I use to have or full strength back in my chest. However, I can run a 5k nearly as quickly as before just don't ask me run a 10K!

I have read a few posts about recovery and it seems to be 1 to 2 years is quite normal so take it easy.

Andy

road2ruin profile image
road2ruin

Hi Si,

Sounds like you're having it tough. I had a mechanical valve fitted last year with open heart surgery and I too went into AF just after I cam out of hospital. I was admitted in to the local hospital and put on a drug called Amiodarone and it certainly did the job for me. I am off it now and on long term bisoprolol and ramipril, I remember the AF was awful, especially as I had just been discharged and didn't know what was going on. I believe about a quarter of patients who have a heart op get AF and most of them eventually return to normal, its just a waiting game as the heart heals. You must take it easy, little by little. I wasn't really up to much at all until about week 8 and even then it was raking the leaves off the grass and I would suffer chest pain for a few days after and fatigue. Eight months on now for me and I still suffer pain from time to time when I do something silly. I am also still not back to my post op fitness level, but getting there, slowly. I am 50.

If you are concerned, either call the hospital direct, the BRI gave me a phone number to take home, or call you GP and tell them it's urgent. They should arrange another scan. At the moment though it might be you are trying to do too much, too soon.

Best wishes

Hi Si, it won’t last forever, but for now you’re doing WAY TOO MUCH. And i think it’s entirely possible this could be causing your AF. Sorry to be blunt, but I needed to hear it very stark when it was me.....

Sadly our heart can’t tell us at the time of an activity, that it’s too much. We only find out a bit later (for me, the next two days). When it’s asked to mow a lawn, the heart does as it’s told and silently copes, because it doesn’t have many ways to say stop without causing danger (can’t give us trouble at the time of running from a lion). But then it has nothing left in the tank to cope with even sitting on the couch.

I did too much in the second week post OHS and got AF & HR 150 tachycardia that wouldn’t go for 36 hrs, till reset by cardio version. Bear in mind, that “doing too much” at that point was carrying two small plastic bags for about 20m. Literally that little was too much. So I was much more cautious after that, but even so, when I did too much & got tired, it caused me no end of palpitations, pounding heart etc. I think I only narrowly avoided more AF, but my rhythm was frequently way off.

I think our hearts sometimes have to object to our brain’s desire to get on & do stuff. It is soooo hateful to rest, but it doesn’t last for ever. And if you don’t rest, it will take longer & you may have / cause other issues.

The heart isn’t like an ankle, it can’t be fully rested because it has to beat 24/7. So we have to allow it some rest by sleeping a lot & avoiding exertion.

Maybe consider an experiment, have a week or two when all you do is stroll round the block, watch TV, nap, repeat. See how you feel. It may take a few wks for your heart’s electricals to calm down, but if it works, you will have some good info.

For me, I had to do “stuff” in only half hour increments for quite a long time. Walking the block really helped my stamina over time, as well as my mood & emotions.

Other things that helped me were - having a counsellor to talk with (helped me ‘accept’ reality & i didn’t need to worry about worrying them, unlike my spouse); choosing a realistic medium term goal (eg a holiday, event or physical activity) to aim for, that was far enough away that it was realistic to work towards slowly; keeping a health diary to notice small improvements I’d have missed otherwise (eg didn’t need to nap today, after yesterday’s walk to park !); asking questions of the cardiac nurses, re what was normal etc. My scar was also painful for a long time, and my neck/shoulders too, from unconsciously hunching to protect it, so very gentle chest stretching helped my back over time.

It’s a tough balance, between what we want post-op, and what we need. Sort out the ‘need’ first, give it a few months and the time will come when you can do what you want again. Rest up, Si, just for now.

in reply to

PS, on second thoughts, the ‘resting’ experiment is not a maybe. You need to find out if your activity levels are what’s stressing your heart to AF.

If resting a few months doesn’t remove the AF, there could be a minor post-op problem to resolve. Docs told me that OHS has a small chance of prodding one of the electrical nodes & leaving it too sensitive, which can cause post-op AF. There’s a procedure that can help (ablation, less angst than OHS I’m told).

But you need to know whether it’s self-induced first.

And I’m wondering if stressing a new valve is supposed to be avoided as well? (I had a hole in heart patched up & was supposed to avoid straining the internal stitches, avoid chance of blood clot etc).

Sorry to be so blunt again, hope it doesn’t sound too lecturing, but I know I needed several lectures (& physical lessons) to realise I had to rest.

And I know how low this can make us feel. I’m sorry for the hard recovery for you. Maybe speak to GP about counselling, since you don’t have the support network that would come with cardio rehab at present. It will pass, it takes time, for me it was 6m till I had enough energy to move more, about 9m till I was almost fully myself, and then after a year, I was fitter than before.

Lindaguise profile image
Lindaguise

Hi Simon

I'm 16 weeks post triple CABG and I'm having problems with constant high heart rate, 97 during the night asleep! I feel like you during the day , my cardiologist thinks it maybe anaemia, I have a very low haemoglobin since surgery so I'm having iron infusions at the hospital, I'm hoping this will cure it, if not they will up my bisoprosol, but I'm already on 10mg which is more than before my surgery. I know it's frustrating for you but keep on at your GP/consultant to remedy it! Good luck and let me know how you get on, I'll let you know if the iron infusions work! Best Linda

ph5019 profile image
ph5019

Hi, although I had a heart attack and 5 stents followed by a diagnosis

Of HF 2 months ago, we are all in the same boat, about 50% of us suffer sleep problems and anxiety, feeling worse because of the meds. Suggest you phone for an appointment with your local NHS counselling service it's called Talkworks in my area. You can usually self refer, it's hard for my wife as well I try not to upset her but it doesn't always work. Just keep going one day at a time and I am sure it will come right in the end.Please try to look after the wife it's really tough for them ' Paul

Mikedabike profile image
Mikedabike

Hello, I understand fully the frustration of being fit and strong and then having to undergo OHS. I am not a medical expert at all, but by your post it seems to me that you are trying to do far too much, too soon. The problem I had was that I felt so good after my AVR that I almost felt like I could do anything. In many ways I guess I was lucky, as two days after returning home I had a TIA. Luckily I fully recovered from it some 8 to 10 hours later. However this really stopped me in my tracks. All of a sudden I became very scared in overdoing it (which is no bad thing after major surgery). It then took me about 3 months before I gained the confidence to start properly exercising. Even then I just started with walking, building up steadily the time, distance and the amount of hills walked. Fast forward to almost seven months after my operation. I am hillwalking, cycling, doing kettlebell workouts - all the time constantly being wary of overdoing it. At times I have overdone it, and simply said - right - take a few days off to recover. Unlike when I was younger, I keep now telling myself, there is no rush, take your time. I was lucky enough not to suffer any pain around the sternum area. However if I did have pain I would have referred myself straight back to my GP or surgeon. I would limit myself purely to activities like gentle walking until the pain disappeared. Good luck with your progress.

Si1972 profile image
Si1972 in reply to Mikedabike

Thank you for your fantastic answer, all the answers have been very interesting and helped me. I'm going to slow down and not be so stubborn. Once the Atriel Fibrelation has been sorted I will feel better. I wish you well for the future.

EmmyLaury12 profile image
EmmyLaury12

It sounds like you have been through a stressful time Simon.

This support group will help you and reassure you .

I had a HA middle of April this year and had a stent put in -whilst in hospital caught covid . Recovering now but it’s a slow process .

Give your body time to heal . I would use your Gp too as they can help to reassure you .If I can get through a hard time I’m sure you can too with help and support .

Hope you get well soon,

Take care ,

Sheila x

Si1972 profile image
Si1972 in reply to EmmyLaury12

Thank you Sheila x

TMeditation profile image
TMeditation

Whoa! Slow down! I had an AVR last year and took things at a much steadier pace for several months. During the operation my heart went into AF and I’d never had it before. Like you I found it the single most difficult thing to deal with - it wrecked me and I ended up in my local a and e on several occasions as I was unable to cope. Whatever you think of yourself let me tell you - you are doing amazing! This is a massive op and your body needs time. Just back off a little and give yourself a break - you’re probably just where you need to be if you stopped pushing yourself. Things can wait until you’re stronger, there’s no harm in that. Also, like you, I would often think I felt better before my operation! I really resented it for a while - I loved my busy life! My cardiologist told me it would take my body a good 12 months to completely recover from the operation and whilst that scared me at the time I genuinely feel he was right now. Take a step back and be kinder to yourself. Good luck and keep us all posted on here. Sue

valeriep profile image
valeriep

I'm going to add my voice to say - I was quite shocked when I read the activities you've been undertaking! I developed AF after having 3 stents inserted and my doctors told me it was probably just my heart protesting at being 'messed around with'. They were right and with medication, it soon settled down. You've had major surgery - a far more traumatic procedure than mine - and you're pushing your heart to work as if nothing's happened to it when you should be giving it some time to recover; no wonder it's acting up! Hopefully, your phone appointment will help to put your mind at rest; be honest and tell your specialist what you've been attempting to do and see what he says (I suspect he'll echo the comments above). In the meantime, be patient (easier said than done, I know, when you desperately want to get back to 'normal life'!) and I echo Sue's comment: try to be kinder to yourself.

Si1972 profile image
Si1972 in reply to valeriep

I certainly will slow down, thank you.

Mart_B profile image
Mart_B

Hi Si

I had AVR in Nov last year and in hindsight, I entered the post op phase with unrealistic expectations of how quickly I would return back to normal - and even what ‘normal’ would look like for me. The years that I spent in countdown mode to the surgery had debilitated my overall health. I unconsciously did less as my exercise capacity diminished. Consequently, the first ‘normal’ I achieved c. 6-weeks post-op was pretty low down the fitness ladder. I was disappointed that climbing stairs left me a bit breathless, and that even modest walks creased me. The hospital literature suggested a return to work, even heavy manual stuff, was possible after 2-3 months. For me, at that stage there I was anxious at the prospect of walking more than a mile, and avoiding anything that looked like a hill.

The replies that have been posted recommend sensible exercise routines with modest and incremental raising of level. In my case, I was too impatient and overdid exercise on the good days and then paid the penalty for a number of days afterwards - with a cost to my moral and my wife’s patience!

My advice to a person undergoing AVR would be as follows;

- Don’t base your expectations on the stories of the fortunate few that are able to run half marathons a few months after their operation. The ‘real’ recovery experiences are those you listen to from fellow ex-patients at rehab classes - I found their journey’s much more akin to mine than the accounts I read on the Internet. I.e. Progress just isn’t linear and that’s absolutely the norm; it’s reasonable to expect hiccups - they can be scary but are nothing new to the health professionals and typically resolvable.

- Don’t fixate on your new heart valve as the only reason for not feeling good. For me, blood tests a couple of months down the road from the procedure identified folic acid anaemia and very low vitamin D - I felt so much better when these issues were sorted.

- Go at exercise systematically - be patient. Adopt a programme that aims at small incremental lifts in intensity and patiently stick with it - own it and manage it well. For me, walking proved the best exercise. I used my phone to log my daily total steps and set doable targets that I adjusted each month. I was surprised to find that a 10,000 steps a day goal is doable - not all at once but consisting of 3-or-4 walks over the day and at a steady, reasonable pace. My build up took from March to May and I have to say that achieving what amounts to a reasonable level of fitness gave me a huge lift.

Very best wishes on your personal journey!

I never bet but if I did I’d back you getting there 100% :-)

Martin.

Si1972 profile image
Si1972 in reply to Mart_B

Thank you so much Martin.

Ianc2 profile image
Ianc2

Some people have incredibly fast recoveries but it still takes about 8 weeks for the sternum just to knit together.. If you push it it can unknit and cause major problems At about 3 months it has managed to knit together but it will take about a year to get most of it 's strength back.

I had open heart surgery and my exercise was measured in steps, then driveways, then lamp posts, etc. You have to take it easy while your body tries to sort itself out, repair everything in sight, and then slowly pick up speed. The local hospital did not start the rehab program until 10 weeks had expired and did not do anything that involved stressing the rib cage., Just steady gentle exercise. Now is not the time to see how strong you are.

Atrial flutter is apparently quite common, after heart operations I had it, and easily fixed by an ablation , but your body still needs time to get it's act back together. Take it easy, your strength and fitness will return in due course. Gentle exercise and rest is the order of the day. Enjoy a pleasant lazy summer, and if there is anyone around to wait on you hand and foot, make the most of it . 'chocolate cake, a small piece if I must', etc. You will get told soon enough when you are well..l

Si1972 profile image
Si1972 in reply to Ianc2

Thank you so much.

Meli4 profile image
Meli4

Hello there. I understand your frustration. You are young and want to regain your fitness. I had open heart surgery in July 2018 and was left with AF. I take a very low dose beta blocker to control it. I am gradually finding greater fitness since lockdown and hoping that I might take up running sometime soon.

I think you are being incredibly tough on yourself. At 8 weeks following my op I was managing a gentle walk down the drive and back. I now walk 6 miles without a problem. Please be kind and patient with yourself. The sternum can take some time to heal my doc said a year is not unusual.

Slow down and accept it’s a bit of a journey to recovery. You will find your old self again. I wish you all the best with your recovery. xx

Si1972 profile image
Si1972 in reply to Meli4

Thank you so much

Magicmog12 profile image
Magicmog12

It does sound as if you are doing too much too early Ive been doing the same thing. Im about 11 weeks post op had an aortic vavle replaced mitral valve repaired and a hole in the heart mended but I feel my mental health is in bits having worked, gardened, walked the dog to name but a few .I also feel cheated re my body but I have put working in a stressful job for some 14 yrs down to this to a degree. My other half doesn't do stress so he says but hes getting a bit better at listening. AF was diagnosed just after my discharge and I take Amaradione for this it appears to be working but I remember feeling so disappointed and thinking Ill never return to normal-Im still thinking this but as others have said on this site it does take a long time for our bodies to repair which isn't surprising when you think. Ive also found the cardiac nurses and my local rehab team quite helpful. I think Id feel better if I could have met up with a rehab group face to facs but of course thats not possible at present. Try to be patient I know its not easy

Si1972 profile image
Si1972 in reply to Magicmog12

We seem to be on the same page. It's very hard to adjust and it's not being able to do the things we once did that affects me mentally. I know it's not for ever, but when you see your garden descending into a jungle and the leaflet I received from the physio team in hospital has stated week 8 garden duties can be performed. I feel my muscles are turning to fat and my strength diminishing. A vein prospect but I can't help it. I'm positive once my AF is in sinus I can walk more and get strength back into my legs as they are like jelly after a mile. I hope you prosper in the coming weeks. I will explain my feelings on the phone to my consultant and hope I can get some assistance with the AF. Thank you for your reply.

LMor profile image
LMor

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LMor profile image
LMor

Shaneeksmith!!!!! Stop with the fake advertising and trying to Con people. I have reported your posts. Anyone reading posts from this person, please do not fall for anything they say. It’s Fake and a massive con!!!!!

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