Ok so second day home after AVR via OHS on Monday. I have a couple of questions.
I’m still pretty knackered all the time and keep falling asleep but guess that is just the body’s way of telling you to take it easy.
I feel like I have stitch a lot of the time. Worse when sitting down. Has anyone else experienced this? Is it normal?
Also getting loads of ophthalmic migraines. Prone to a few before the op, but getting them regularly now and eye sight just seems generally off kilter.
On meds now so I guess some of these could be having an impact -bisoprolol, clopydogrel, lansoprazole, furosemide for water and just paracetamol for pain.
No other health conditions and AVR due to bicuspid valve, age 52.
All thoughts and comments greatly appreciated.
Thanks me hearties
Sam
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Samgeorge
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Hello. Various aches and pains and odd twinges are to be expected and most will not be of concern. That said, it’s always worth erring on the side of caution. When you were discharged you should have been given paperwork including a number to call the hospital ward you were on. I’d suggest giving them a ring for advice. They have your notes there and can advise accordingly.
Hi, glad to read your home and starting your road to recovery, first when we have OHS we have quite a big dose of anesthetiser so we feel tired and a bit foggy, we were on the table for some little while.The aches and pains we are put into some odd positions arms at odd angles for them to operate so some will be from that. As for migraines I didn’t have anything like that so a call to your cardio nurses might be worth it. As you say after surgery have tablets and they do take a little while to get use to.
Remember to take it easy baby steps, keep doing your breathing exercises and the coughing one, they really do help, when we are on bypass they collapse the lungs so they need a little help to get those little pockets filled out again.
As I said give your cardio team a call just to put your mind at rest. It does take time but you will get back to normal.
Hey Sam. First off congratulations for coming out the other side! I had my AVR two years ago at age 50, so quite similar to you. I was in a fog of exhaustion for about six weeks, so that's very normal, and you're right it's mostly just your body saying 'woah'. Two days' home is very very early days, so just try and take things easy.
Re stitch. I don't recall having that specifically but these operations involve a lot of muscle manipulation (I for eg had a really tight and sore neck, shoulders and back for a few days). So hopefully it's just that and will sort itself out? But if not and you're worried obviously do approach your GP or the cardiology team. I also experienced quite a lot of discomfort from my drain wound (more in fact than from the main scar) so could it maybe be related to that perhaps? I am just guessing I hasten to add.
Migraines, no idea I'm afraid, not something I experienced personally. But hope someone else on here can help?
Meds sound good, though no idea if any of them might cause a link. Ditto I was just sent home with paracetamol for the pain and cocodamol for emergencies (though in the event didn't need it). Then I'm on candesartan for BP and dispersible aspirin for the (tissue) valve. I was also given a bottle of laxative but at that point certainly didn't need it! Just if that helps by way of comparison.
Main thing I'd say (and which I'm sure you're already doing) is rest up (no lifting!), take the painkillers if you feel you need them, don't rush things (especially when it's cold and covid outside) but then gradually as you begin to heal and get your strength back begin trying to get some walking and breathing exercise in, Covid restrictions permitting obviously. But of those, take your time and be kind to yourself would be my main ones! But if you need any advice or reassurance happy to try and help if I can.
Best of luck with the recovery and hope you're on the mend quickly. Take care.
Thanks Nic. I think I’m probably just impatient to get myself back to normal 🤭. Luckily no one around me will let me do anything but take it easy. I too have been sent home with codeine and lactolose, just in case but not finding I’m needing these at the moment. Thanks for the advice much appreciated. I’m hoping the ophthalmic migraines are most likely just stress related. Did mention them to the consultant and he didn’t seem bothered about them. Cheers Sam
Glad to hear your home. I don’t have any great helpful info but I remember having the odd pains here and there but I always got them checked out after my surgery.
I’m no waiting for a date for my 2nd AVR. Can I ask, how did you cope with the wait? I’ve been told my valve is struggling and needs replacing ASAP and all I do is worry that in the meantime something may happen and it turns into an emergency rather than planned which won’t be good. You had an awful wait for yours. My previous I was told I needed it and within 4wks I had it done (I was 28and didn’t have a family) this time I’m 37 in March and I have 2 little ones, 5 and 3) how did you cope with the worrying, I’m being consumed by it.
I wish you well and the best speedy recovery. Take it easy and listen to your body
I really feel for you JJL15. The waiting is the hardest part and the worry in case anything happens in the meantime. I just tried to take it as easy as I could. Avoid putting too much pressure on your heart. I have to say my husband had a few tantrums to put up with. It must be terrible having AVR for a second time but I’m sure everything will be fine.
Take care of yourself and if you want someone to just moan to about how unfair it all is feel free to message me. 🤞🏻for a quick turnaround for you.
Thank you for replying to me. How was it having it during the pandemic? With everything going on my previous one was done at Hammersmith hospital London but not sure if they can do surgeries right now due to COVID. This is also my worry too! I imagine they wouldn’t leave it if was super urgent that it needing doing. My daughter is disabled and fully dependent on me now she sadly had a stroke when she was 17months old. Thankfully my parents are around to help and said they will come over every day to make sure I don’t overdo it in the meantime. It’s an awful ask for them, my mum is 68 and dad is 74. I feel terrible about the situation we knew I would need this eventually again but didn’t think it would be off the back of 2 years of hell with my daughters health.
You have really had a rough time if it. The pandemic slowed things down for me but the hospital staff are the best. You will be well looked after pandemic or no pandemic. I’m sure if your op is urgent it will get done ASAP.
I had few symptoms prior to and it was only picked up through a free health check with work so I have to count my blessings for that.
Glad to hear you have family support but we do feel like a burden don’t we. Might be worth speaking to your GP to see if you can get any other support.
Hello SamgeorgeOthers have commented about the fatigue - there's nothing quite like it. Just pace yourself and remember - baby steps to begin with. Its early early days.
I had really bad occular migraine after both AVR. I did ask after the first and was told by the surgical registrar that it was 'normal' and had to to with 'debris from the bypass machine' which made me imagine that I had iron filings floating round my bloodstream from a rusty old machine!! It did persist for some months afterwards so I saw an opthalmologist who did necessary checks (for detached retina, although my symptoms more consistent with occular migraine) and reassured me that there were no iron filings but 'debris' from my own recycled blood crossing the blood brain barrier. Honestly wished I never asked. Migraines eventually subsided but I had same after second op - so clearly something gets disturbed. I had occular migraine before surgery and get it still.
Its worth asking your GP or cardiac nurse or the nurse at BHF as anything unusual should be reported - or ring the ward and ask them.
Good luck with the recovery, take it slowly to begin with and listen to your body - it will tell you when to stop.
Hi SamI had AVR and a double bypass two and a half years ago. I am considerably older than you 79 now, but I can identify with both of these symptoms. The disturbances in my vision started when I was still in hospital and I was told it often happens and would fade. The dramatic ‘slipping of text out of place’ did stop but I have developed silent migraine. It occurred quite a lot at first but now happens occasionally. I have had it checked out and no problem found.
The stitch sensation used to come when I sat on an upright chair for any length of time, but it does fade and eventually disappeared.
Thank you so much JayceeW. I’ve had the ocular migraines on and off for years so very used to them just not so frequently. It’s good to hear that you had similar symptoms including the stitch which is just uncomfortable. Hope you are fully recovered now. Take care
Hope you are feeling well today. I had OHS for a Type-A AD 3 months ago. My experience of the first 2-3 weeks sounds very similar to what you're experiencing at the moment. I had frequent optical migraines - 5-6 a day on occasion but these diminished with time. I felt a great deal of 'brain fog' at first and took ages to complete simple puzzles that I would normally have done in a few minutes. That also has passed, thankfully.
I also felt very tired and this was due to many factors - trauma of surgery, anaesthetic /medication, body in full repair mode and also difficulty sleeping at night both in hospital and upon arriving home. I just rested and took naps as required during the day. This has also improved beyond recognition and my energy levels are much better by now.
I think it's a question of resting as needed, getting a bit of exercise and building up gradually and also having a good, sound diet.
Glad to hear you got through similar. It’s early days yet as everyone keeps rightfully reminding me. Feeling achy but pleased the worst is hopefully over. The day is mostly consisting of naps and brief walks but I’m sure I’ll get there 😉
I have just read my stroke diary for the month after AVR.
Within two weeks i was getting good nights sleep which made me feel much better. I started to exercise.
At the end of a fortnight i reprimanded my self for doing far far too much. So I resolved to take naps, then do exercise and only then try to do much else.
Sleep improved. I reduced the painkillers and progress came along nicely. I had put my recovery before all the household chores and tasks.
Your posting has caused very interesting info regarding stitch like pain and rotten migraine. Aren't the hearties a helpful and knowledgeable bunch ?
I find my diary invaluable. I couldn't recall when and what i did without these simple jottings in a diary.
Good luck in your recovery. I had my AVR through OHS over a year ago and whilst I am well recovered now I do remember problems with my eyesight for some weeks after. I’d got myself a number of jigsaws to do to try and pass the time and I just couldn’t focus on the pieces. Most frustrating but it was noticeable when all went back to normal. I, like you, was in a multitude of medication including many of those you mention. Give yourself time Sam, I was extremely fit before I had my op and thought I would breeze through it - no way - it takes as long as it takes and your recovery will refuse to be rushed. Anyway you sound like you’ve got great support. Best wishes, Sue.
Thank you Sue. The eye problems seem to be a common theme. I was going to pass some time learning to crochet...ha not yet. Glad to hear you are fully recovered now. Take care, Sam
Hi Sam, I’ve had two AVRs via OHS, first at 52 and second at 57. After both I had trouble with focus, concentration and memory loss, but all resolved themselves over the following weeks/months. I had a lot of aches and pains, particularly after my second op when I had really bad shoulder, neck and back pain, but a lot of that was because I had to have a pacemaker fitted after my AVR. They also did an exploratory incision in my groin, never did explain why, and damaged a nerve, so was on paracetamol, codeine, gabapentin and morphine for a while! If you’re still concerned about your migraines, give the ward a ring. Mine were very helpful if I had queries.
Things should start improving more over the weeks ahead, as long as you don’t over do things. I was back driving after six weeks (local short trips) and work after 12. You’ll be surprised how quickly you start feeling normal again.
Thanks Wendy. I’m really hoping I don’t have to have a second AVR as you and some of the others have. That said it’s amazing how little pain I have when you think of what they have done.... incredible.
I had migraine with aura most of my life prior to AVR at age 60 in August last year. For the 10 preceding years it had been improved massively with Clopidogrel ( off-label use following me taking part in a drug trial) The Clopidogrel was stopped just prior to the AVR ( also open heart) and replaced with dispersible asprin daily for 3 months. The migraines and visual disturbances returned with a vengeance almost immediately. I also had odd visual disturbances after the op, but after 6 months they are fewer and less troublesome. Recently though I have had a cluster of migraines and my GP doesn't want to prescribe Clopidogrel again and has instead suggested I try Amitriptyline. The cardio team also suggested this for nerve pain following the op so it may work for both...Once the numbness wore off after around 3 months, the nerve pain began. I think it is all just knitting back together again, though 2 fingers on my left hand are still numb. Good luck finding help for the migraine and please report back if you happen upon the miracle cure? Thanks and swift recovery. Jeanie
Thanks Jeanie, sorry to hear you have been suffering. If I find that elusive cure I will certainly let you know. Mine are often caused by stress and I can safely say this is the most stressful thing I have been through so probably understandable but still a little worrying. Take care. Sam
Hi Sam
So pleased to hear you’ve had your AVR OHS
You sound sore and exhausted. The advice you’ve had here is the best and this lot know their stuff!
I’ve just got my date today for the same thing. I will be following your recovery and would like to wish you all the best. It sound as if you have a good support system at home too. Let them look after you.
Hi Maisie, so happy for you getting your date through. The thought of it is far worse than the actual procedure. I have been pleasantly surprised how little pain I have. Really just aching and tired. All to be expected. The doctors and nurses are just fantastic. Best of luck with yours. I’m sure it will be fine. Take care. Sam
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