My son Shane is hopefully being admitted tomorrow for aortic valve replacement on Wednesday. He is nervous but in good form and realises it has to be done. We are relieved he was called so quickly for surgery as we thought a long anxious wait was ahead of us!
Any advise on aftercare would be appreciated from you who have gone through it . Thank you ❤️
Hi Maria
I'm waiting for the same surgery so can't give any advice, but I can direct you and him to an amazing a Facebook group around Aortic conditions and surgery. The details are below. They are so supportive and have given me advice and reassurance.
I hope that everything goes smoothly for him and that he is on the road to recovery very soon.
Best Wishes
Joanne
X
Thank you I will do that now
Thanks SO MUCH for this post and all your advice. Where is your son being operated ? I’m still waiting. 7months and counting. I’m having to go private cos of the waiting list delay
My son had surgery on Wednesday and only had to wait two weeks as he was critical. We are in Belfast at the royal Victoria hospital. I was looking at private when we got the call . Please let me know how you get on ❤️
Hello Mariawatters,
Remember he must follow the instructions he will be given, no lifting anything heavier than half a kettle of water, no arms above his head, no pulling or pushing movements. This is for 8-10 weeks while his sternum heals. Keep doing the breathing exercises he will be given by the physios in hospital I called them huffing and puffing, and also a coughing one and shoulder rolls.
His lungs collapse when we go on bypass so they need a bit of help to fill all those little pockets out again. Doing these once he is home is really helpful. Tell him listen to his body if it says I am tired then rest. Do his walking, slowly does it but daily. I used to count lamp posts and try and get to the next one on my next walk. I know it sounds silly but it worked.
If he gets emotional don’t be worried, it’s normal we have been given a huge dose of anesthetiser and some very exotic drugs and they take longer to leave our system then we would imagine, plus our brain is still trying to work out what happened to us!
I know as parents you must be so afraid, but your sons medical team do this as their day job, and in just a few hours time he will be on the heart mended road.
I send you very best wishes let us know on the forum when you can how things are.
Pauline
Thank you Pauline All great advice and things I hadn’t known about the reaching etc . We will put that all in place . I look forward to the day we are out walking. I know we have many challenges ahead so I want to prepared.
I will let you know how he gets on , thank you ❤️
Hi Maria
Will you wish all my very best to Shane for tomorrow .
I’m 11 months post AVR OHS and I’m feeling fit and well. As I’m 68 now your son’s recovery will be a tad faster than mine!
In saying that there are “rules” to adhere to. It’s not advice it’s rules!!
The main one and the very important one is not to lift your arms up above shoulder height. It was easy for me to follow that rule as I found it impossible to do anyway 😂. As your son is young (anyone below 60 is!!) and he will try to reach out for things as we all do.
My advice for you or anyone looking after him is to put everything he needs within reach and not on a height. I went round the house , on advice from this wonderful forum, and lowered everything I use regularly to below shoulder level. The advice is not to lift anything heavier that half a kettle full of water. This is so important as the chest has been cut open and needs time to heal.
Before I write a novel on the subject 🤣 you are welcome to read my questions and worries here on my page and my general wobbles pre surgery and my recovery helped by this forum. The Hearties ❤️ are a wonderful practical and supportive group of people. There’s a lot of help and advice on here.
One of the best things I bought was a foam wedge for sleeping upright in bed. Lying flat is almost impossible in the early days.
The other advice is take the medication for pain. He doesn’t want that pain. It does not help recovery. Don’t be brave in the early days. Take the meds!!
I also wish you all the best. Please let us know how he goes on.
Kind Regards
❤️Maisie❤️
Thank you Maisie . That’s all very very helpful . As he’s now an adult I’m not party to all the conversations he has had with consultants and with covid he hasn’t had much contact himself. He will hopefully be admitted today for his preopp with surgery tomorrow…. I am frantic with worry of course and talking about it is scary but I have to know the details so I can help him.He will be with his lovely partner but she knows I’ll be here to help and takeover when needed.
I’m glad you mentioned the emotional side to it as he was very emotional for a long time when he had two previous procedures at a very early age nothing as big as this one.
I will be on to let you know how it goes and will come back for advice when we with no doubt face a few challenges !
Thankyou ❤️
I echo what Rhino says . Join the Facebook group they've suggested. You'll get lots of good advice and support there, although this BHF forum is very good as well .His hospital should also give him a booklet which will give him lots of advice on after care
Wishing Shane and yourself all the best. All I can say is follow advice, especially on diet and activity.
Hi I’m 7 days post op had my valve replaced on 17/12 and staggered at how far I’ve come !! It’s pretty scary I won’t lie but like everyone says follow the staffs instructions - you don’t want to get up but do - you will feel like a car crash but move - small milestones each day - a little bit more each day slow and steady . My stitches come out tomorrow that’s another milestone - I walked 500 yards yesterday - and it feels incredible !
Watch out for tears I’ve shed a river ! Take the meds be guided and just keep on beating !!! This op isn’t small but it is frequent they know exactly what they are doing ( god bless ‘em) they have a pathway post op for you to follow just do what they say - it works !!
I wish you all well - a new year a new valve !!
CH
Oh thank you so much ! Congratulations on your opp and best of luck on your recovery. Yes I expect tears as I understand what a massive thing it is to go through. There will be lots from me too ! Can I come back to you to see how you are doing
Of course ! Happy to help and share - it’s a new year new valve it’s very positive - I wish you all well . Ch x
Hi Leonardo
I hope you are still doing well after your valve replacement?
My son had his on Wednesday and is doing well . In a lot of pain of course and feels lousy but thankfully he got through it . One question I have is .. he had three drains in , one in his shoulder , one in his stomach and one in his chest . He had them all removed today thankfully but why so many and why the shoulder and the stomach ? I don’t want to text him too much but I’m curious about this and no one seems to know ?
Hi,
I had mine done in 2017. I was 54 and went for a metal valve. It was a long process getting the strength back in my sternum and muscles that had been pushed by the clamp for 9 hours! Slowly does it. I had my surgery in July and managed to get on my skis the following february. It's a slow, patient recovery, don't overdo it! Drink loads of water and a nurse told me to vasaline my scar to heal and I have the slightest line now! Healed beautifully. I had a metal valved and the only difference I have now is that it ticks, which has become quiet comforting 😉😉
I know you must be anxious. I was given a new valve in August. Please take it slowly. The worst part has been the low mood. Just support him but perhaps don’t smother him. I’m doing great now. By the summer he will be walking miles. It’s amazing how poorly I was and how bionic I now feel x
Hi thereI'm 3 weeks post surgery tomorrow. Main thing I would say is tell him not to expect his recovery to be ' linear'. Some days I've felt much better than the day before, others I haven't . That worried me at first but I've realised it's all going in the right direction. Some days I'm much more tired so I just give into it now when that happens. The first week is tough. No denying it. But once through that you do start to feel more yourself and in control. Give him my best wishes and happy to answer any questions. He'll be fine.
Penny
Hi, I had AVR a few years ago, age 49, and I tied a knotted piece webbing to the bottom end of the bed to help me get up, they'd had something similar in hospital, it's the type of thing you can get from Halford or online for securing loads. The other thing is cotton (if possible) pj's that button up the front, I ended up cutting up a cotton work shirt, anything else was too hot in hospital.And take it easy.
Andy
All the very best wishes for Shane's op. I'll be having the same procedure done at the end of January. Full recovery for open heart surgery as I understand takes a number 3-4 months but varies quite a bit from person to person depending on level of fitness and generally on individual response. Gentle exercise eg walking soon after the surgery is advised. Very important to avoid lifting to enable the chest to heal completely. Interesting the surgeon told me that the chest when fully healed is strongly that before surgery! Support in bed at nighttime with an appropriate pillow eg v-shape to prevent rolling on the side, is important too as there is a need to sleep on the back. Gentle breathing exercises are good. And when coughing hold a cushion to the chest to give it some support. The physios I'm sure will give Shane good advice and exercises to follow as recovery takes place. Personally I'm going to keep a diary so I can track progress. Others in the forum, who have direct experience after having the op, I'm sure will be able to give you and Shane some good tips and advise. Mike
3 years on, the key thing I remember are sleep - get a v shaped pillow to immobilise you in a semi upright position. Any movement will initially be uncomfortable so get used to sleeping on your back. Pain control - its not brave or sensible to suffer so a four hourly paracetamol regime worked for me. The 'wilderness weeks' - don't worry that for the early weeks, recovery will be almost undetectable although happening. I turned a corner after about 14 days.Listen to your body - it's in charge of healing. Mending will be long and slow with no shortcuts but 12 weeks should give you sufficient healing time to begin to do 'normal' again. Oh, and take any rehab classes that are offered - regular exercise within your capabilities will reward you.
Good luck!
I had my AVR at the end of March this year. Looking back I can't believe how far I've come. So important what has already been said about not trying to do too much or overstretch, because you don't want to do any damage to the sternum. I found it a good excuse to get my kids to be helping out more!
Seriously, don't underestimate the level of tiredness - I pottered about one day so glad to be home and felt wiped out the next day.
Emotions such as tearfulness can come out of nowhere, that's normal. Exercise- I started by walking 10 mins each day for a week, then added 10 mins each week until I got to an hour. Then I'd try to increase my pace or include a few inclines.
Most important thing is for him to take things at his own pace. There will be good days and days where things feel harder - that's ok. The first few weeks are hard because of all the limits on what you can do - but this means it becomes easier to see progress as time passes when bit by bit you can do more.
9 months on, I am doing most things I did before, I just get very tired come the evening. I wish your son all the best 🙂
HiI had AVR May 2020 age 65.
There's lots of help on BHF website so I won't repeat it all, but what Tomatoes123 said about keeping a diary is good. I tracked what I did each day (how far, heart rate, how I felt after etc) and it was very useful. It helps you realise how far you've come, most days!, and definitely helped me. It's quite a long road but the journey has to be done.
Everybody's different so let your son just take it as it comes and I'm sure he'll be fine.
Be patient with him.
I am so pleased that your son has got his surgery quickly as the waiting was the worst part (I have known it was needed for 2 years although only waited a month once I was critical).I am 49 and had surgery on 16/11 (6 weeks ago) and feel great and can walk 10,000 steps in a day now although I don’t do it everyday.
I am not going to add to the brilliant advise above but it’s unusual movements that I didn’t consider struggling with like moving clothes in the wardrobe due to the weight. Your body tells you what you can do.
I think the worst part was for my family waiting and unable to see me. I knew I was fine but my messages did not always make sense due to the drugs and it was so busy in hospital I was often too busy to talk. I was home after 5 days but the ward have dealt with my queries afterwards and were fabulous.
Good luck to both your son and your family
I had my AVR on 7 October and cannot believe how good I feel already. I thought it would take much longer. I have to say the first week was challenging to say the least and the bypass machine caused a lot of - temporary - kidney damage that I wasn't expecting, but once in hospital just go with the flow, do as you are told and you will be home in no time. Listen to your body. There is a set of 4 videos on YouTube that I found really helpful to watch first - youtube.com/watch?v=U_lTF2o.... That way, nothing came as a surprise. Hope all goes well for Shane.
Hi Maria, I think recovery is different for each person, but in my case, the first week at home is the toughest, but it gets a little better every week. At first, it was a difficult to shower, a shower stool helped. Getting into and out of the bed was a bit difficult as well, so I needed a bit of help from my wife. I sat up most of the day and was quite consistent on doing my breathing exercises and wriggling my toes for the first month. It was tough mentally to keep doing them, but I knew if I wanted to get better in the fastest time possible, I needed to follow the doctor's order. Now, 4 months after my surgery, I'm able to do most everything, except lift heavy weights and will be starting a running program. Personally, I think it's important to keep mentally strong while recovering as well as doing what the doctor's tell you. I hope this helps. If you or your son wants to talk more, just let me know. Regards, Monty
I had mine replaced last December, I was 55 and had no idea I even had a heart problem, mine being genetic, bicuspid rather than tricuspid.
Whilst the thought of surgery is frightening, the surgeon's and their team are fantastic and the care you get from the nurses is unbelievable.
I would suggest investing in a V shaped pillow, this helps with sitting and sleeping as it wraos itself around you giving you plenty of support.
I kept a diary once I became more mobile and could walk. I out all the little positive steps in it from walking upstairs properly, the walks I did and how I felt. This helped further on in my recovery to look back and actually see how far I had come, it does feel like you haven't made progress and rehabilitation is long and slow so this really helped me.
Unfortunately you do experience lots of different pains as the muscles and nerves recover, I found the nerve pain the worst but your GP can prescribe medication that does help.
I did suffer with anxiety as I'm sure most heart op patients do and it's quite normal and to be expected, I had 3 trips to hospital and quite a few calls/visits to the GP, all showed that I was fine.
Your rehab team will look after you once discharged and are really helpful and supportive. Due to COVID mine was conducted over the phone but their advice was brilliant so listen to them.
There will be days when you can't do anything and just feel tired and again that's normal. Just take it all slowly and whilst recovery is slow you do get there. I returned to work in June ( I returned hole in January) part time, I'm a landscape gardener, and have slowly built myself up to 4 days a week. Being a physical.job I do get tired and need the extra days rest but am looking to return to full time in.tge new year.
Good luck with everything and to ou will find this site really helpful 👍
Wishing Shane a speedy recovery. I have found all the comments helpful. I am waiting for AVR surgery
Hi, I had mine replaced in 2015,
2 weeks before Christmas ,
I was 57 at the time,
Best Christmas present I've ever received!
Was back home after 12 days,
You wont feel any pain ,
they make sure you have plenty of pain killers!
Was a bit knackered, and sore for a few weeks ,
but you just have to take it one step at a time, (literally)
I was back at work after 3 months,
At the time I was a landscape gardener,
(only gave it up due to covid lockdown, )
Just do what they tell you ,
and remember your in the hands of the NHS ,
Cant get any better than that .
Cheers,
Paul
As others have said stick to the rules! The hardest was sleeping on my back which you have to do for a good while. We rolled up an old duvet to prop me up which made it more comfortable. The first 4 weeks were the hardest but then I felt massively better and things improved more quickly. I was driving again at 4 1/2 weeks . Walking every day was important and after 8 weeks I started rehab classes which really worked well. Was back at work after 8 weeks too but took me a while to be able to fully concentrate. As people say it’s 3 months before any heavy lifting. I’m 14 months post op now and feel 100% normal.
Hi Maria. I’ve had 5 surgeries, my last 2 being AVR. Is he having a sternotomy or minimally invasive as the advice and recovery is very different for each. My last surgery was just over 3 months ago and I’ve just come off the golf course. Mine was minimally invasive this time and I was driving within a month and exercising gently after 3 weeks. He’ll be surprised at how quickly he gets back on his feet and the thought of what is about to happen is generally worse than what actually does happen. As everyone has said, take it easy, stay positive and keep talking to his friends and family about how he is feeling as the surgery can mess with your emotions quite a bit. Everyone here is always available to talk. Wish him all of the best
Wishing him all the very best for his operation- I had the same in May this year and feeling good and recovered though progress can be slow to start with. Of course though he’s younger than I am (62) so he may bounce back! Sometimes however it may feel like one day forward and two back but he will get there in the end. Everyone has given some great advice here with their replies and I echo it all especially the not lifting or reaching above shoulder height. He’s got to think of his chest area as a fragile egg that has been mended and act accordingly! 😉 Please let us know how it all goes. Very best wishes
Sarah
Hi Maria. I had AVR three years ago with Minimal Invasive Surgery and my recovery was about 3 to 4 weeks. Within 8 weeks I was cycling 10km again. I had lots of great side effects - eg my snoring stopped overnight, no more swollen ankles and a new lease of energy, The best advice I can offer is to trust the medical team, keep active and keep the heart & lungs pushing. But don’t over do it. We are always here to offer encouragement. Wish him all of the best. Simon.
Hi Maria,
Was in for aortic root replacement and possible AVR in July this year. Surgery went well, was lucky to be in Harley Street after an NHS cancellation a couple of weeks prior.
Was in hospital for 10 days, bit longer than usual due to pericarditis post op. Best advice I can give is do as the surgeon/consultant/nurses tell you.
I thought I was good after 5 or 6 weeks post op and tried to start working from home again but it knocked the stuffing out of me. 12/13 weeks post op resting up but ensuring you do the walks each day and do the gentle massaging of the chest as well if it is a full open heart procedure and not a tavi.
Hope all goes well but ensure he does as he is told.
I had an aortic valve replacement a couple years ago. I have a pig valve and not a mechanical valve but the heart beat sounds louder to me. and I remember that I didn’t have a voice for at least a week. I was in the hospital for 5 days. I had to sleep in a recliner for six weeks on my back when I got home. I was looking forward to sleeping in a real bed but it was not comfortable for several weeks, even in a nice comfy bed. I had a physical therapist come to the house twice a week and have me walk a little at a time. First ten feet then twenty and eventually 100 ft and I was exhausted each time but it kept getting better. I was on warfarin for six weeks and that was not good. I was glad to get off of that. I did not need pain meds when I got home. I liked having apple juice to drink and didn’t have much of an appetite. It did take about a year for me to feel back to normal. I am not happy to have a huge scar down my chest but happy to be alive.
Hi Maria, I had AVR about 13 years ago and to tell a long story short it was all good and even now I'm only on 75mg aspirin daily (that's when I remember).After surgery I was 12 days in hospital until discharge. During the time in hospital naturally I was heavily drugged and I had a lot of frightening nightmares, almost a parallel existence and each time it was the same nightmare and waking up in the morning was a huge relief.
As soon as I left hospital and started my convalescence the nightmares stopped and life began to return to normal with good food (but well balanced) and moderate portions and regular exercise (also moderate) but gently increasing in intensity daily.
I found that my memory was affected slightly and I couldn't hold numbers in my head for more than a few seconds (I think this was due to the fact that I had open heart surgery and for a few hours I was on an artificial heart) but that all sorted itself out within a year.
He must listen to the doctor's advice and also listen to what his own body is telling him and make a judgement. In my own case I tended to push myself and did more exercise than advised because I felt I needed to. Before I had the operation I'd kept myself pretty fit, not overweight etc
You will be surprised how quickly he recovers. Good luck
Good luck to your son. I’m still waiting. Where is your sons surgery ?
Hi
I’m not sure if I replied to you or not my heads all over the place … he had his surgery in The Royal Victoria in Belfast . We are so lucky as it’s one of the best and only 8 miles from home … good luck , I hope you hear news soon as the waiting is the worst part .
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