Open heart surgery

[heatherleon]

Hi, I am possibly looking at having open heart surgery as I have two leaky valves. I have a mri booked for next week which will determine what surgery I will be having but just wanted to hear of anyone else's experience of open heart surgery and how long it takes to recover, many thanks, Heather x

[Yumz199725]

I can't advice on much because I'm waiting for surgery aswell I don't know when I'm having it all I know is that I will need it at some point I had my MRI few weeks ago and I'm having a stress echo soon so hopefully should tell them whether I need the surgery yet. Wish you all the best hun. What valves are leaking, mine is mainly my aortic valve is the issue, mixed valve disease so will need major heart surgery to replace the damaged valve. Have you started getting symptoms yet? Mine is affecting me alot now so been having to take it easy alot x

[heatherleon in reply to Yumz199725]

Hi, thank you so much for your reply, sounds like we are in the same boat, mine is my tricuspid that is severe and mild to moderate mitral, they are also checking for any other congenital heart disease defects!! What symptoms are you getting? I just have very little energy and get dizzy quite a bit so same as you I'm taking it easy, probably other symptoms as well but you get use to them like it's normal. How was your MRI? I've not had one before. Do you know what hospital you'll go to, they are sending me to Papworth x

[Yumz199725 in reply to heatherleon]

Yeah definitely sounds like we're the same, I get dizzy, and feel faint and sick from standing up too long and feel very weak and exhausted very easily. I haven't got my results back yet but I don't think its gona be good cause my most recent exercise test showed my valve is causing limited capability to exercise which explains alot about why I been feeling so rubbish. I walked like 11,000 steps in one day and when I got home and sat down when I tried to stand up I was soooo dizzy so had to sit back down again which has never happend before. I'm hoping I won't be waiting to much longer cause I can't take it much longer I'm 27 and feel like I'm about 70 odd. My specialist nurse even agreed that I would feel much better when I do have the surgery. My aortic valve is moderate to severe aortic regurgitation and moderate to severe aortic stenosis and I was born with congenital heart disease bicuspid aortic valve. Did they say what other defects there were looking into?? X

[heatherleon in reply to Yumz199725]

Hi, you really sound like you're going through it hang on in there and just try and take it easy and hopefully they will get you in soon. Do you have anyone to help you? I have my son living next door who is going to help me The letter to my doctor said that the MRI was to.....'assess the regurgitant volume of the tricuspid valve regurgitation and also exclude any other associated congenital heart disease defects'. It will all be worth it in the end when we are fixed and full of energy again x

[Eglatine in reply to heatherleon]

Papworth is amazing, you will be in good hands.

[MrsAA in reply to heatherleon]

Hi Heather, my wife had her Aortic Valve replaced in St George's Hospital in London on the 20th of January and was in hospital for 5 days, they took very good care of her. She has a follow up appointment with her surgeon on the 9th of April, she is recovering well now but everyone is different with the recovery process, she is 76 so at the moment I'm chief cook and bottle washer and wouldn't have it any other way, good luck.

[heatherleon in reply to MrsAA]

Hi, thank you. Wishing your wife a speedy recovery and carry on the good work x

[PadThaiNoodles]

I had OHS in Sept to repair my mitral valve and replace my aortic valve. It took about a month for the main incision to heal, but more like 2 months for the chest drains. I think I was a bit slower than many because I have crap connective tissue genes, but then again that's what caused the valve issues, so you may be in the same boat.

I was back driving at 6 weeks, but still with some residual muscle and/or sternum pain. That has faded over time, but still isn't 100% gone (it can get a bit sore when I overdo things, but nothing "sharp" or worrisome). I also still have a little bit of nerve damage (just odd sensations like there being some tape stuck on my chest), but these are fading as well.

I think I would have been OK going back to work at 6 weeks, but happier at 8 or 12 weeks. (I'm retired so it was a non-issue for me.)

My sister had hers done much younger (she was 40; I'm 60), but the recovery time wasn't hugely different.

[heatherleon in reply to PadThaiNoodles]

Hi, thank you for your reply and for all the really helpful information. I really appreciate you sharing your experience. I'm in my 60's so will probably be in the same boat as you. I hope that you're doing ok and being looked after x

[Craig53 in reply to PadThaiNoodles]

Think it's different for most people recovering IAM nearly a year since op but still have unstable heart beat so still not much better jet

[Craig53]

While you're in hospital 7 to 10 days if all goes well depends how your body deals with it and how after you feel emotionally afterwards also keep everyone posted on your progress everyone on here are to help each other best wishes

[Survivor1952]

Age, fitness and motivation have a big impact. I was 70 when I had my OHS for AVR and CABG. I did my first parkrun (5k) three months after my surgery with the blessing of the cardiac rehab team. I did my 55th yesterday. I wasn’t a runner/jogger until my recovery started. One thing triggered me, I was told I’d only get back 60-70% of my pre-surgery fitness, I’m now fitter than I have been for many years.

[Summerlavender]

Hi heather, I had my OHS for Aortic mechanical valve replacement in May last year, the only symptoms were palpitations and I had a couple of private tests as I was (supposed to be) going on holiday a few weeks later and was a bit nervous about travelling like it. Turns out it I was born with bicuspid valves and had severe stenosis (age 49), I had the surgery at Bart’s and was in for 7 days out for one then back in for one as I had Afib. I was in ICU for one night then high dependency for a couple of days, by a couple of days later I was just on regular paracetamol which was manageable. The wound itself healed fairly quickly on the outside and was uncovered within a few days. The way it’s done I was told means your chest is far stronger than it was before.

Back home I needed a lot of help for the first couple weeks, mainly with getting from a lying or sitting position, one nurse suggested tying something to the end of my bed if it’s possible to help pull yourself up slowly, they are not supposed to suggest this apparently but it helped me. I bought a wedge shaped cushion from Amazon and had about four pillows plus cushions both behind me and under my arms at the side and sat upright in bed for a good while afterwards, my hubby slept on a blow up mattress on the floor as I needed a nice still bed to myself plus the pillows took up a lot of room 😆 I thought I would be bed bound for a while afterwards but was downstairs from day one when home and managed to get to our bedroom two floors up slowly but ok.

By 6-8 weeks I was lot stronger and started rehab at about 8 weeks twice a week which massively helped with both confidence and recovery, I can’t recommend this part of it all too much! It’s nerve racking on a few different levels but the reassurance of what you are ok to do is crucial.

I suffered with pain on my left side a bit afterwards for a few months mainly breast and collarbone and to be honest still have niggly shoulder pain most days of my left side which I may get referred for, but it’s nothing major.

I hope your tests go ok and whatever happens come back here and there will have been somebody who has been through the same and will help you with anything you might need to know, they are such an amazing bunch of people! Best of luck 😊

[road2ruin]

Hi Heather, There are so many variable, and even the hospital stay can be as little as 5 five days for some people and months for others.

I posted a diary of my stay and recovery (you can find it in my profile and posts). This was over five years. Have a read, I think you will find it useful.

All the best, Peter

[Skiffrower]

I had mitral valve repaired and aortic valve replaced in June last year. ( Aged 67) In hospital 1 week ,the wounds healed very quickly. But it took a while for me to feel happy lifting things because of the cutting of ribs and sternum and of course getting the muscles healed . I am still cautious and don't fill garden bags so full. I also had problems with the drugs I was prescribed post op which delayed me having the energy to be very active. But I do seem to be v sensitive to drugs. Lots of other people have no problems. Even in spite of this I know I was walking 5k before post op check at 12 weeks.

I chose to wait until I'd done cardio rehab before I started stretch yoga . ( 3months) Downward facing poses I needed to be careful with. You are told that this adds pressure on the heart)

I was back walking 5 miles within 4 months. I still find hills make me puff but I also have asthma.

Your body will tell you what's what but if you can get on a cardio rehab course , I recommend it because it gives you confidence in your body and it's capacity.

[Audi1955]

Hi l had my open heart surgery in march last year in Edinburgh royal..it feels like it's gonna take forever when you 1st get home with all the discomfort and strong painkillers. My advice is get of these painkillers as soon as possible and use paracetamol which doesn't give you terrible constipation like the strong one's do. It took me about 6 months before l could say l had felt normal again with no aches and pains when doing normal things you do daily and now 11 months on l can forget l even had surgery because l don't have to even see my cardiologist for another 3 years for a check up.

[Petitlady]

I was diagnosed with severe aortic stenosis at 66. A real shock as my symptoms were angina and I thought a few tablets would sort me out! The diagnosis was pretty much two years ago and I had OHS in June 2023. I spent 5 days in hospital. By the time I came home I was able to walk round the house and despite a bagful of medication the only painkillers I was given were paracetamol. I’m not complaining just illustrating that it’s not that bad. I slept a lot in the first two weeks but steadily improved and increased activity gradually. Just walking a bit further every few days. By the end of August I was well enough for a short holiday in France, although still needing an afternoon rest. I am no athlete, respect to those who are but I’ve resumed the life I had before. I look after a granddaughter two days a week, do some gardening in the summer. Outings and holidays as we at her and budget allows! If I had known two years ago that I would be where I am now I would have been greatly reassured.

[Bobkins99]

I had OHS at the Brompton in July 2022 at age 64. It took about a month for the wound to heal. I was up and walking within days and pushed myself to walk a bit further each day. It is a chore as you will feel totally out of breath to start, but be determined, it works wonders. I returned to archery with a very low poundage bow after 3 months but gave myself costocondritis. My consultant, who was a lovely Italian lady, said (picture it in a heavily accented Italian voice) "you silly boy, too soon"I would say 4-5 months post op would be about right for more physical exercise but certainly walking or similar right from the off. I did 10 sessions of cardio rehab and that also helped.

[Magpie7]

Hi Heather, I had heart surgery for a leaky aortic valve ten weeks ago (Dec 5th 2024) and am now, more or less, fully recovered. I love hiking although only walking locally for now. They generally say that 3 months is the recovery period and I would say that is about right depending of course on your own health condition. Hope that helps 😊

[Lexi72]

Hi heatherleon I would not worry about the MRI it is just a bit noisy. The MRI technician moves you up and down a long enclosed tube with magnets to image your heart. Some people find it a bit claustrophobic but the only problem I had was I had difficulty holding my breath when instructed for 20 to 30 seconds. The slower your heart (mine is slow) the longer you need to hold your breath. The next step if the cardiologist decides that an operation is appropriate (they may want more tests first) would be to refer you to the surgeon. If they do decide surgery is necessary and appropriate you then have lots of pre op tests( I have had virtually every bit of my body scanned and tested) there can then be a long wait before you get to the top of the list. The NHS operates dynamic lists but it is now 5 months from seeing the surgeon in my case and I don’t yet have a date. The estimated time at my hospital was 3-6 months for a priority 3 patient (like me) but it could be quicker if your case is more urgent. Everyone on this site and the two people I know who have had valve operations say the operation is far worse in the imagination than the reality. All heart surgery on NHS is concentrated in specialist centres who do lots of similar operations and what is a big thing for the patient is just the day job for the surgeon and the NHS heart teams. Hope it all goes well i am going to post an update when I eventually have my valve operation best wishes Lexi71

[maggie80]

Good Morning, I had a quadruple bypass and a replacement heart valve Nov'21. It took me twelve month to feel myself again. I did the six week rehab in the February'22. Everbody is different. Take it a week at a time.

[Reggaelover]

Hi Heather, I had open heart surgery to repair leaks in my mitral and tricuspid valves last April. I’m 65 and have always been fit and active. After my surgery I spent a day and a half in ICU and then 4 days in a recovery ward before being discharged home. I was able to walk and move around freely as soon as I left ICU. I had very little pain and discomfort from my sternotomy scar, which has healed well. I did have some nerve pain and weakness in my left shoulder and arm, which took 6-8 weeks to resolve - this is not uncommon.

I started a community cardiac rehabilitation programme a couple of months after surgery. I returned to driving after 3 months and returned to the gym after 4 months. After surgery my heart rate was a little high (70s-80s) with missed and extra beats from time to time but this settled down after a few months - now in the low 50s. I had a short episode of atrial fibrillation around 10 days after being discharged home - but this corrected itself after a few hours and hasn’t recurred since. It can take 6 months or so for the heart to heal and remodel following surgery.

Recovery is very much an individual process but I didn’t find it anywhere near as bad as I expected. Feel free to message me if you would like to chat in more detail. Best wishes.

[heatherleon in reply to Reggaelover]

Hi, thank you so much for your reply, it is my mitral and tricuspid valves that are leaking. Tricuspid severe and mitral moderate. Reading your experience is really reassuring. I'm 68 and live alone but I do have my son living next door, I'm normally fit and active and love sea swimming and walking but I'm not allowed to swim at the moment. My main worry was being able to look after myself at home after surgery, would you think that I should be able to do that? I hope that you are fit and active again and keeping well x

[Reggaelover in reply to heatherleon]

I had a severe leak in my mitral valve and a slight one in my tricuspid valve. Hopefully, if you’re fit, active and mobile you should be ok. You’ll have to avoid heavy lifting and pushing up with your arms for up to 3 months - so just be careful when sitting and standing and when getting into and out of bed. But moving around the house, having a shower (although my wife helped), cooking etc should be fine. It’s handy having your son close by. I didn’t drive for three months but when I was a passenger in the car, I was advised to sit in the passenger seat with a pillow or cushion between my chest and the seatbelt - just in case of an emergency stop. In the days after surgery, you’re advised to deep breathe and cough to bring up any mucus that might be there - when you cough, it’s useful to squeeze on a pillow or rolled up towel - that said, I didn’t find the pain at all bad.

[PadThaiNoodles in reply to heatherleon]

Google "move within the tube". That's probably the biggest thing for getting along on your own post-discharge. It makes a huge difference.

[heatherleon in reply to PadThaiNoodles]

Thank you x

[Faub]

Hi I had two open heart surgeries, aged 15 and 40, on to close an inter-ventricular septal defect, and the other was an aortic valve replacement (Ross-Pears procedure).In my experience, the recovery depends on so many factors. Your initial status of health before the surgery, age, the type of surgery you're getting, how well it goes, your mental health before and after surgery, nutrition and many other aspects.

In general, one suggestion I would give you is to try to get to the surgery in your best possible shape. Prepare your body and mind for it. It's a big shock for your system, so in the months before eat as healthy as you can, reduce alcohol consumption, try to stay fit physically and mentally.

It will not seem useful, but your body will be already better equipped to heal afterwards.

Good luck!!!

[Claire_42]

Hi Heather, my partner had open heart surgery for mitral valve repair at Papworth in January 2024 and I've got to say the care he received from start to finish was top notch. Follow the advice they give you and every week you will notice an improvement in what you can do and how you feel. It took him the full 3 months to recover and be back at work full time and having that time allowed him to focus on his recovery both mentally and physically. Also the cardio rehab classes are excellent. I wish you all the very best with your surgery x

[heatherleon in reply to Claire_42]

Thank you so much Claire x

[Doodlebug63]

My husband had OHS in June 2020. He had got to the point where things were difficult for him to do without getting extremely out of breath and tired. Now, nearly 5 years on, he is in fine health, gardening, walking, driving distances etc aged 74 yrs old. The operation has made a fantastic difference to him physically and mentally.

You can’t lift a full kettle nor anything as heavy or heavier so perhaps making hot drinks may be more difficult for you? I’m sure he would help out with meals but, although not cheap, COOK do a really wonderful and tasty range of foods that you just pop in the oven. These maybe a solution in the short term.

My husband found sleeping one of the most difficult parts so we purchased a wedge pillow from Amazon and that was a real help. He struggled with the initial (expected) tiredness too, naively thinking the prior tiredness would go straight after the operation. It was probably about 4 weeks when he could start to see the difference.

He spent 7 days in hospital (a little post op confusion kept him in ICU for 2.5 days) They did warn us that may happen so I made him a ‘All about me’ sheet (as it was Covid and I wasn’t allowed in the hospital at all from start to finish, which was hard for both of us) and the doctor who telephone me found this very useful to reassure him (as she could speak to him with lots of facts and things he liked. He was suffering with some sort of very short term paranoia and thought they were all out to get him. It was very hard as he was phoning me asking me to come and help rescue him. To reassure you this doesn’t happen to everyone and it was only for about 3 days).

The only other thing you will need help with, perhaps a nurse visit? is the compression stockings. Now helping get those on and off was a trial for me 😂

I wish you all the very best when you have your operation, I’m sure you will see fabulous results after a comparatively short time and feel the difference, for the better.

Sorry, this is such a long reply! ☺️

[Leonardo1]

I had ohs 3 years.ago - aged 62 . I was back at work 3 months later . After 3 weeks I was shocked at how well I felt at 6 weeks I felt so good !

The first 5 days in hospital are a car crash but do as you are told get up ! Get moving ! This helps recovery .

Look to your future ! feeling better and healthier focus on all the great things you will be able to do - mine was a game changer my life is so much healthier . I took the opportunity to change poor lifestyle choices ( no drinking caffeine sugar ) and be more active .

I am forever grateful to our incredible (if over worked ) NHS so I didn’t want to sabotage their skills . Look to your healthier future it’s going to be amazing

Good luck xx

[heatherleon in reply to Leonardo1]

Hi, what a wonderful story, I love your positive outlook and thank you xx

[Gden67]

I'm 73, I had a double bypass 2 years ago. In hospital for 6 days, walking around my local country park the following week, taking train journeys to walk further afield the week after. After 6 weeks I was back driving, 4 weeks later I was back off road cycling. I now cycle 2 or 3 times a week up to 35 miles, almost all off road and walk my son's dog quite often. To be honest, it took me longer to recover from knee surgery 20 years ago.

Best wishes and good luck.

[Geoff47]

I had bypass surgery. I was in hospital 8 days and back at work after 10 weeks. That was 29 years ago!

[Beanlover]

My husband had open heart surgery nearly 6 wks ago for a leaky aortic valve.,He is 79, and was fairly asymptomatic before the op, though it was apparently worn out and full of holes.He was in hospital for less than a week, but he developed Atrial Fibrillation post op, which I gather happens quite frequently and can be temporary or permanent.

His recovery is quite slow. His GP who is very helpful has 2 other patients who had the same op, but prior to my husband and he says they are just starting to feel as though they are beginning to improve. It takes time for the heart to replenish itself after the indignity it has suffered,!! so to be honest don't expect to be running around quickly. My husband has to take blood thinners because of the AF. It will be clearer at his post op review in 2 wks whether this is likely to be permanent. Make sure you take the thinners at the same time each day,,if you are prescribed them.

Take your time to recover, and don't feel disappointed if it takes longer than you thought it would.

[Calkeith4]

Hi Heather, I had OHS in July to repair my Mitral Valve, and also an ablation to try and cure atrial fibrillation. This was at Barts in London, and like a lot if previous replies I was in there for around 7/8 days. The chest wound healed fairly quickly, about a month. I was determined to start moving as soon as I was home in a bid to get back to normal. I probably pushed myself too much looking back. Sleeping was a bit of a problem at first because of the wound. Be prepared for your emotions to be all over the place for a while, apparently this is quite normal. Going home from hospital was scary at first as well, the safety net has been removed. For a while it felt like I'd never feel like the old me, but after about 4/5 months I suddenly realised how good I was feeling. I'm 65 so I was thinking of retirement soon anyway so I've decided 3 days a week is enough. I'm a self employed gardener so I think full time would be beyond me now, but if you're doing something less demanding you should be able to go back to work if you want to. Seven months on am I glad I had it done? 100% yes. I was only going to get worse. I still have A Fib but there doing a cardioversion to try to sort that out soon. If you met me in the street you'd never guess, I can do pretty much what I did before apart from walking up steep hills, which I have to take more slowly. Good luck, stick with it, you'll be glad you did.

[paulcongleton]

Hi. I had OHS February 27th 2024, so pretty much a year ago. Aged 50 at the time they repaired my mitral valve which had leaked since birth. The NHS wythenshawe hospital were superb.10 days in total at hospital, unfortunately 5 days in ICU as one of my lungs collapsed during the operation, but even this setback didn't really stop my recovery timeline.

Self-employed Gardener for work so was always anxious about been off work to long, but followed what the rehab nurses recommended, did the exercises and was lucky enough to have rehab class in my own town and that was invaluable.

I went back to work after 11 weeks, weeding and mowing, not advocating this but managed to cut trees after 13 weeks and other than the odd issue of occasional brain fog moments I've never looked back.

Everyone's journey is different, but take your time, listen to your body, listen to the experts and take up any offers of rehab.

Good luck

[Carole28]

Hi HeatherI had aortic valve replacement surgery Nov 2023 and have had some recovery problems as I have other medical conditions

The waiting and preop anxiety is the worse

Most people make a wonderful recovery and Im sure you will too

I joined here for support and also 2 brilliant facebook groups all of which helped me immensely

Best wishes

[heatherleon in reply to Carole28]

Hi Carol, thank you. I've found the support on here amazing. How did you find the facebook groups? I hope that you are doing well now x

[Carole28 in reply to heatherleon]

Have sent you a private chat message with some info🥰

[Royl]

I know you posted a while ago but I just saw this...I had a replacement aortic valve and ascending aorta plus a by pass in July 2019. I'm 77 soon! I experienced less pain than I expected and was out of hospital in 4 days. My problem was congenital and I was astonished at how quickly I felt well and so much stronger.

Unfortunately, I then got a chest infection...anti biotics sorted it. Cardiac rehab was really important, since they had you doing exercises I was frankly scared would harm the chest wound or even the new valve...Many of us felt this, but the physios knew better!

Anyway, I rarely think about it now and just take the meds each day. Health wise I did 16460 paces walking to the bus and walking round Brighton on Saturday. I'm a regular cyclist/walker and still sometimes indulge in a car track day. The best thing the surgeon said after my op was 'you'll think you'll never get better than you are today, but this is long road and you'll get better and better'. And I have!

Some lessons..

Exercise, even very light exercise, is really important for regaining overall health, and mental wellbeing - this is a major physical AND psychological event. Talking about it can seem just boring but it matters for getting things in perspective...

To start with I found sweet foods seemed to cause minor fibrillation. This has settled but did emphasise the importance of a healthy diet

Trust the nurses in cardiac care and ICU - they know their stuff

If you're offered pain relief take it, unless there's a very good reason not too! Being seen to be brave isn't clever imo.

Everyone's journey with OHS is unique to them

Good luck.