Post AVR and at home.

[Jewel7]

Hi all,

My husband has been home for 6 days pist AVR. He is so tired and sleeps so much that he is unable eat a meal without falling a sleep. He get frustrated that he is sleeping so much and feel hot one minute then cold another. Every little effort that he makes just wacks him out. I’m just asking does anyone else had the same issue post AVR.

Thank you,

[francesw47]

Hello

Wonderful news that he is home! You must both be so relieved that it is finally over.

Recovery takes time. Its individual and depends on how poorly he was prior to surgery. I seem to remember you saying that he was quite limited, breathless etc. It is only a week or so since surgery and his body has been through a lot, both before and during surgery. If you have access to the cardiac rehab team (by telephone) do contact them with any worries as they can guide you through what to expect.

I have had two AVR (don't worry, what happened to me was quite rare) and although my recovery first time was textbook - I was also quite fit prior to going into hospital. The second op was just a year ago and I was really poorly before - and struggled on a daily basis. Surgery itself was complicated but the aftermath was like nothing I have ever experienced before - and really frustrating. It has taken ages and I have had to learn to move forward with very very small steps. I was decompensated (not only was I poorly before but I was kept in bed for 5 long days afterwards, so some muscle loss) and really felt like a steamroller had run over me.

It has taken ages - just walking down the ward was hard work but gradually I was able to do more, more and a bit more. I laughed that my first goal was to walk to the pharmacy - gone are the days of the pub!! And after that the GP surgery. Oh so sad! But each milestone was a great achievement and I'm afraid you will just have to be patient.

SLeep is the body way of healing, but do the walking, gradually build up a bit more daily and nap when necessary. If you are worried contact the cardiac rehab nurses or your GP. Let him eat well, gradually exercise and nap as and when. He will get better and stronger and you will both look back and marvel at how much he has improved.

I am delighted to hear your news --- you have both been through a bloomin' awful time, so take it steady and indulge!

All best

Francesx

[Nic25]

Hi Jewel7. Fantastic news first that he's home and on the mend; so glad for you both. On the tiredness, if it helps one thing that blindsided me (though it should probably have been obvious if I'd thought it through) was the sheer fog of tiredness afterwards. There would be days where I'd spend all day lying on the sofa watching box sets and then be exhausted from it the next day! His body has been through a lot and recovery and mending will take time.

For me, the fog slowly began to lift at about six weeks. I'd lined up all sorts of improving books to read in my 'time off' but ended up just spending my days watching films, sleeping, pottering around the kitchen and making a Lego model of the Titanic! So you just have to be patient as well as a patient and roll with it, rest and not fight, and in time hopefully things should improve.

Also I initially made a point of having a proper sleep in bed in the afternoons, which helped, rather than trying to 'push through'. Gradually these shortened and then became lying in bed reading and then, finally, pushing through. But it is about recognising you will be weak and tired and not feeling guilty about it!

Hot and cold - that could be a side effect of if he had any blood transfused. It could also just be a sign of fatigue. But it could also of course be a sign of a fever, so probably worth monitoring and, if you're worried, contacting your GP? But I emphasise I am no doctor.

It's very early days and probably will be baby steps at first. But hopefully, gradually, he will improve. Very best to you both and don't overdo it yourself!

Good luck

Nic x

[Jewel7 in reply to Nic25]

Thank you Nic for your reply.... Gosh I thought before the operation and whilst my husband was in ICU and with COVID was such a worry, but now I think I’m just as worried, I try to rationalise why things are happening such as the odd flush hot and cold. Reading the drug leaflets some of the side effects are hot flushes. Nic can you remember if when you had a the extreme tiredness and fatigue did you feel cold also. I know I’m probably just worrying but as you can imagine I don’t want to miss anything if he needed intervention.

Thank you again,

[Jewel7 in reply to Jewel7]

His temperature is 36.4 so alittle cold but not spiking a temperature. Thanks.

[Nic25 in reply to Jewel7]

Hi Jewel7. To be honest no I didn't; don't recall that at all I'm afraid. I had my AVR in a Dec and so was convalescing over Christmas and January. I had one episode ( on Christmas Eve!) of heart 'flutter' that I went to the GP about but it wasn't AF and generally I was very lucky as from there it was just a case of building back strength and the breastbone healing? But everyone is different and for all I know it may be common? My father in law many years back had a heart bypass and was bitterly cold during his recovery for eg?

To be honest if you are worried it makes sense to speak to your/his GP or one of the cardiology nurses for some advice or reassurance, just to set your mind at ease?

But good luck again

Nic

Xxx

[hf54]

Hi Jewel whilst my condition was substantially different - heart fail ure just to get the water off and feel it every day I am something approaching a good physical condition has took six weeks-and as I said I believe mine was much less serious did not require an operation. Sleep is the body‘s way of healing and unless there is a sign of deterioration or something the physicians have asked you to look for I would take this as good. When I first came out of hospital I could sleep two hours plus in the afternoon. Gradually I have stopped waking up in the middle of the night and sleep well from midnight and can or can’t have a sleep in the afternoon depending . Give it time and I am glad to hear that the operation was successful

[080311]

Great news that he is home after the op, and now on the road to recovery.

Sleeping is his body getting over a major op. He has to build his strength up and as others have said depending from where you were before the op it’s how far you have to come back.

Temperature wise I was hot a lot I said they had done something to my thermostat when I was on bypass. I wasn’t cold though, maybe a call to your cardio team might be a good idea. Just to put your mind at rest.

Get him to keep doing his breathing exercises, I called them the huffing and puffing helps clear the lungs, and gentle walking.

Jewel7 it’s really baby steps I can appreciate how frustrated he must feel but assure him he will get there. Remember to take some time for yourself he will need your strength for a little while yet.

I send you both best wishes Pauline x

[Mikedabike]

Hi Jewel, I had my AVR in December 2019, and returned home 7days after the operation. As other people have said, everyone will heal and deal with it at different rates. I found the first few weeks I was generally exhausted, and regularly had to go to bed to sleep. In addition I also at times felt very cold, something I had never suffered from in my life. All I can say, is it will take time. The symptoms you describe I would guess are very common. I too would get frustrated at being exhausted doing the simplest tasks. I remember vividly being totally shattered just having a shower. Over time things do get better. I found gentle walking really helped, inevitably followed by falling asleep once I got home. Good luck with your husbands progress.