hello,
I am 32 years old and im due to go for open heart surgery next week for aortic valve replacement.
I have an enlarged heart and im experiencing some significant burning pain in my left side, gnawing pain in left ankle and collarbone area too.
What should I expect post surgery (praying it’s a success)?
Any advice would be greatly appreciated.
All the very best,
Adam
Hi,
I'm 37 and 5 weeks post op from open heart surgery having had a triple bypass. So my what to expect might be a little different as they are different operation.
For me, I woke up in ICU with them taking out my breathing tube. I then dazed in and out for quite a while even back on the ward. I was moved quickly the next morning to a chair and encouraged to sit up.
I was attached to lots of machines and had tubes coming out etc. Again being under the pain meds and tired I wasnt in pain.
I spent less than 24 hours in intensive care and was move to a high dependence ward.
Here you are encouraged again to sit etc. With all the tubes I wasn't expected to walk yet. Pain was managed well and nurses were excellent as looking after me. I was in a bay of 4, so at this point I had begun talking to them and having visitors. But again for the first few days there was lots of sleep.
The next few days, I began to walk again with the phyiso each day a different tube or something was removed and I was a bit more alert. I was also given breathing exercises to complete (mine was to breath in and hold).
Nights can be difficult in hospital as machines bleep, and also getting comfortable sleeping on your back can is hard. Also nurses like to do observations early.
I found food difficult. Hydration is important. I also suffered from constipation which became by biggest annoyance. But things eventually sorted themselves out.
I was discharged 6 days after my operation. I could walk around the ward and up and downstairs by myself.
Home was an adjustment and expected again to be tired, finding sleeping difficult. However overtime things have got easier. I still feel my sternum being tight and can still get tired easier. I am due to start cardio rehab mid September.
All in all, in been a challenge but one that will give me a better life eventually.
I hope this has given you some idea. Feel free to ask away anything else. This forum has been invaluable to me.
Thank you so much for taking the time to reply and to share your experience.
I hope you are doing well and I send my best wishes for a speedy recovery.
Thank you for being so detailed. Pre-surgery did you have any concerns, ie did you feel poorly and what was your experience while in hospital before surgery, up to the point of surgery?
Appreciate it may vary from person to person and hospital, but interested to know what to expect.
I am worried about surgery due to some existing issues that nobody can seem to get to the bottom of and understand the risk of the operation.
Many thanks for your time again.
Everything pre was all a bit sudden for me. I went in for an angiogram and they discovered I needed a bypass. So for me there was dealing with all the shock.
There was less than 10day from finding this out to surgery. Luckily I did get to go home for a few days which was good.
I was readmitted the day before surgery. The day before the surgeon came and explained the procedure. But other than that I was just in the ward. I had blood pressure etc.
The morning of I found out I would have my operation in the afternoon. So they prepped me across the morning. This involved showering with a special soap. Being shaved and putting in hospital gown.
There had been a few cancellations on mind I was determined this would happen. In hindsight that was just to not think about it and put my mind off it.
Then around 2pm, they came I got put into bed and wheeled down. My partner was allowed to go as far as the surgery doors. That is when the nerves really set it.
The surgical team were really good at reassuring me. I had to consent to the operation again and then they put me under. I don't remember anything then until I woke up.
I would take in things to keep you busy pre surgery. Books, TV shows on your phone. It can be a nervous time so best to have lots to take your mind off it.
Hi Adam James 157
I had aortic valve and root replacement 4 months ago. Everyone's recovery will be different, but I had very little pain at all, my medical team were on top of that. I was in ICU for longer than planned as I needed a Pacemaker and had to wait for things to settle down a little before they could do that.
Normally they will get you up and walking about and back into the ward as soon as possible.
Do you know what type of valve you are having? I have a mechanical valve, so they had to get my INR - (blood viscosity) to within my target range before I could go home.
Once home I slept a lot, but tried to keep moving around as much as possible.
I struggled a bit because I live alone, so had to ask for help and thankfully friends and family stepped up.
Recovery isn't linear, some days you feel really good and the the next day not so good and I expect to have lows mentally, that's normal.
I joined a Facebook group.. UK Aortic and Heart defects pre and post surgery, when I was diagnosed. They were and still are fantastic, lots of support from people who have been through it and usually can answer your questions from experience. It's a closed group but you will be very welcome if you would like to join.
I hope that all goes well for you next week, but if you have any questions then please feel free to message me
Joanne
😊
Many thanks Joanne. I will message you.
Really appreciate you sharing your experience too.
Best wishes,
Adam
Hi I had minimal invasive surgery to replace my aortic valve with a mechanical one and an aorta repair back in 2005, I found recovery incredibly quick and haven’t looked back since, try not to worry am sure you will be fine .
Dear Adam
I found the worst bit was waiting to go to hospital.
As soon as I entered the hospital my worries melted away..
You will be asked to shower, using the shower gel you will be given.
You will be given a lot of anaesthetic. Of course you will know nothing of the op. Then you might just be vaguely conscious during the day in ICU. Then a day in HDU when you start to come round. Then about four days in your hospital bed, mostly single rooms. No great pain. Perhaps discomfort because you can’t move freely. I got out of the bed the next day. Did all the little exercises suggested to me.
When you leave hospital you must have someone to look after you. You need extra pillows. You can’t lift anything above head height. I took 15 weeks to get mobile . At your young age it could well be less.
This recuperation is really nice because I could notice improvement every couple of days.
I have a tissue valve but, at your age, you will probably have a mechanical valve. Do listen to the medical advice. Listen very carefully to the post op advice and the rehab.
It is not like most other hospital procedures. Very professional staff. Very high success rate.
Best wishes
Sooty
Hi Adam, My best advice would be to just let them get on with it and don't worry about what comes next. At your age you have the advantage of being relatively young and it does make a difference in the healing process post-op in my experience. My first AVR was in 1994 at 33 years old, which was very similar to what Carlg has written.
What to expect afterwards is relative to how you are now, if you were as I was beforehand, it is literally a life changer. I never looked back and had the opportunity to have what most people at that age take as normal. I'd say I did some catching up. There's no reason why you can't do the same.
If you haven't already chosen the valve type, think carefully which type you go for and consider future-proofing. Surgery techniques have moved on so much since my first go at it, so who knows what they'll be able to do in another 10 years time.
My first AV was a standard Tissue, which lasted the best part of 19 years, well beyond the typical valve, but, not unusual, before I had it replaced again at 52. It was always my plan to have three surgeries, each with Tissue, however, I currently have Mechanical AV and MVs, for no other reason that by then, I thought it was grossly unfair to my Wife and Sons to put them through it again. As it happens, I had a third in any case due to Endo. I've no regrets either way at 61, although I do have a preference.
All in all, take it as it comes, live your life afterwards, no looking back, no regrets and as I said earlier, your age is a such an advantage.
I hope it goes well and best wishes.
Heed
Hi Adam, I had open heart surgery to replace my aortic valve 18 months ago, I’m 54.The hospital staff were brilliant and will look after you,let them know if you have any concerns or odd pains. They got me up and out of bed after the first day and I was walking around, albeit slowly. Had to walk up and down a flight of stairs prior to discharge.
Post surgery I was very weak mainly, I must say I had far less pain than I expected. Was on some strong painkillers for a couple of days but asked if I could stop them whilst still in hospital. By the time I got home, 5 days post op, I was only taking paracetamol and then not for long. The weakness and finding a comfortable position to sleep in was the most difficult, you’ll need plenty of pillows to begin with. I slept upright in a chair for about a week, then semi upright in bed. The only real pain I had was if I sneezed or coughed, have a pillow close to hand so that you can hold it against your chest to minimise the movement and discomfort.
I’m sure everyone will say similar but you will be fine, but take it easy, your body will have gone through a lot of trauma. Take your time and don’t expect to rush things. Do take up the option of rehab, as well as giving you gentle exercise it gives you another sounding board, they’ve seen it all before so know what to expect.
Don’t forget it is a mental trauma as well, I still have odd occasions where I feel a bit teary thinking about it all.
Hope all goes well and you will feel much better sooner than you know 😉
Wishing you all the very best. I had aortic root and valve replacement surgery in February 2020. My experience was very much as Carig described above. I woke at about 1030pm when the breathing tube was being taken out and was then able to ring my wife. I was assisted out of bed by physio’s the next morning and ate the best meal that I had during my stay. I was discharged on day five. Keep hydrated as constipation was a problem as the anaesthetic (I had seven hours of it due to the complexity of my operation) makes your bowel go to sleep as they told me. When you get home make sure that you follow the not lifting advice. I vividly recall having an exercise bike delivered and having to ask my grown up son to carry it upstairs to construct it. My wife complained that it was too heavy for him (before he had even arrived) and in frustration I picked it up. Whilst my sternum was ok, I did suffer right arm pain and weakness for weeks after. My fault entirely but just remember your limits. I do a lot of walking like the surgeon recommended. I returned to work after around 15 weeks, the delay being purely due to my right arm muscular pain. I had never had an operation before in my life but welcomed it as it was a life saver.
Top tips - as they told me in the pre-op…. keep ahead of the pain cycle. Take the paracetamol offered and do not be afraid to take Oramorph too. The only real pain that I experienced was an unexpected sneeze when I did not have opportunity to cross my arms across my chest in support of the sternum. Also take the cardio rehab…I never got it due to covid but had a telephone chat instead…my scar turned into a keloid scar now requiring steroid injections. In cardio rehab I understand they advise about manipulation of your scar.
All the very best and it will be over and a memory before you know it!
Hi Adam - I had aortic valve replacement with a tissue valve 3 years ago and my surgeon was able to make a small incision. Now you can hardly see the scar, in fact it doesn’t even get me a seat on the train 😂 Post-op I was very well looked after by the medical team and nursing staff, all of whom seemed to be expert at what they do. You’ll be in very capable hands and you’ll soon realise you’re amongst experts. I had mine done at the Royal Brompton and they were just fantastic! Good luck and keep us posted. It’ll soon be done and you’ll be back to your old self in no time at all. My son got married 3 months after my op and I was dancing until 130 in the morning! Take care. Sue 🙏
Hi....I am in hospital at the mo....2 valve repairs. Initially all went extremely well and I was up and about in a couple of days....bruised and sore but not as bad as I thought I would be. Making good headway and have been hit with an infection which has knocked me backwards and I now have to stay in hospital until that is completely gone. That's just unfortunate for me. I was petrified about the op.....don't be. It really is nothing like what your mind is telling you, in fact I was pleasantly surprised. Click your fingers and you are coming round. They manage your pain so well and the staff where I am are wonderful. ..on top of everything straight away. Before I came in I made sure I did the appropriate chest and breathing exercises......they really do help enormously. I'm not going to tell you it's a walk in the park but what I will say is it's a gift.....it's a hell of an operation to go through....do as they tell you....take your pain relief and get mobile. Most of all.....stay positive and just keep thinking this is your new lease of life. The physio told me that our minds, bodies and hearts are all finding their new normal after going through trauma. There will be some adjustments and every step won't necessarily be forward but your attitude and thought process will help enormously if it's positive. Good luck with everything and keep us informed. You will be fine and you have the biggest thing on your side...... youth. All the best....stay strong xxx
Thank you for sharing your experience.
Sending very best wishes to you for your recovery . How are you doing today?
Hi Adam.....I am getting better again by the day but to be fair....even though I would like to go home I am glad they are monitoring me closely and won't let me home until they are happy. I was quite debilitated before this op Adam so I really do regard it as a gift. It's surprising how quickly you can get back into action after such major surgery. Dont be worried about any of it because you really don't know anything about the op....they are fantastic. Just be prepared to do a bit of hard work for yourself and remain focused and determined and you will be fine . All the best to you x
Larneybuds iam so glad to hear you are getting better. It is incredible what they can do. This is the beginning of a new future for you. Grasp it with both hands. Take care.
Thank you so much....I will definitely grasp it with both hands....I keep saying ....even with a few backward steps... It's a gift xxx
Yes it is a gift you have earned it.Still waiting for test and discussions regarding my issue. I hope you don't mind me asking , you said that you had the tricuspid valve worked upon. Was this repair or replacement? Stay strong.
I Had a Mechanical Aortic valve replaced a year gone August.
I will just say the pain killers are very good after surgery 
The worst things that come to mind for me was :-
They had to get INR level right by adjusting the warfarin level before they would let me home, so I was in hospital for about 10 days but certainly could have been at home after 7 days if not for the INR.
I got very tired very quickly at first, getting a shower had me worn out, would often just sit in the shower.
Slept on my back for quite a while (when I slept)
Spent about 4 days not going out after discharge from hospital, then went for a walk every day building up the distance weekly. (dont forget you have to walk back from where your going)
Was scared to lift anything remotely heavy (you are not meant to any way)
Muscle discomfort in the rib cage, front and back, comes and goes, used paracetamol daily for this for a while.
Oh and getting use to the ticking in your chest, it seems to get very loud when your trying to sleep
Good luck and speedy recovery
Hi Adam,I'm 41 and it's been 11 months today since I had my aortic valve replaced (I had a Ross pears procedure). Everything the other hearties here mentioned is very accurate.
You will go to sleep without even realising and you will wake up in Intensive Care Unit. Take time to familiarise yourself with the room and listen to what the nurse will tell you. In ICU I had a nurse only looking after myself (they do max 2 patients per nurse) so I felt looked after all the time.
They will try to mobilise you as soon as you can take it. Initially a few steps supported, then a bit more. It's unbelievable how quickly your body will respond.
Don't rush things and listen to your body. Don't be afraid to ask questions to the consultants and the nurses, they are there to help you. Drop me a private message if you need any further info. May I ask where are you having your surgery? Good luck!!
Of course. Thanks for sharing your experience. I’m having my surgery in Edinburgh.
I have symptoms unfortunately too so definitely needing the surgery soon.
Hi. I had open heart AVR four weeks ago. The replies here are brilliant. All I can add is not to over think things (it's an unnecessary atress), let the experts do their thing and believe it won't be as bad as you think. I will add that you do not want a cough or cold when you come out (coughing & sneezing is hard work with a recovering chest plate) so maks sure all visitors pre & post op (for a month) wear a mask (you too). If you must cough then clear you throat at the same time - it will stave off another cough for a while. And if you must sneeze then learn to do so quietly & discreetly like a polite squirrel - I sneeze like an angry elephant (loud, wet, my head & chest being thrown forward) and it's horrible.
Also, use a cushion or folded towel against your chest for such things. I use a towel I now call Mr Cuddles and he protects my chest.
There is some really good advice here and I would add as some who had open heart surgery for a mitral valve repair,I am still trying to rationalise the experience 3.5 months later and one analogy I came up with was some sort of astronaut experience.
You go in with lots of support, blasted off with a anaesthetic and then you come round.
You then have to make your way back with the support of ICU possibly with complications and gradually the support is removed until if all goes well you get through it. Similar to a astronaut you have to completely trust ground control and the training you have had before plus remember you will end up back in your own life having to support yourself. I was lucky with my mission control the staff were great and I did lots of research up front which you are doing to.
Good luck and safe trip!
I love the analogy. 😂👍
I’m feeling pretty poorly now so hoping my body is able to pull through surgery and ICU. Very tired and keep getting weird pains.
I’m glad everything went well for you. Sending best wishes. How do you feel now?
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