My 79 year old sister is facing an operation on the valves of her heart, 4 of them apparently. She also has some degree of obstruction of her Aorta. She is so frightened that we cannot have a sensible discussion about it - using dramatic terms like "cracking my ribs open" and "taking my heart out of my chest" for example. She is convinced that she will have to have a "tube down my throat" which is terrifying prospect for her and then being virtually immobile for months, again very frightening for her as she lives alone and has no close friends for support. She has only me and our other sister for support - and I fear that she is "winding herself up" by being melodramatic which cannot be good for her.
Please, is there anybody out there who has had this operation and can give a less dramatic version? Or is it really this bad?
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JimPascoe
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She’s more right than wrong. She will be put under and then intubated with a breathing tube down her throat. Her breastbone will be cut down the middle to spread her rib cage, and she will be put on a cardio-pulmonary bypass machine. Her heart will be stopped while they work on it, but they won’t actually remove it from her chest. Once they’ve finished they’ll put wires or plates in her breastbone to help stabilise it while it heals.
When I woke up I was evidently unhappy about the breathing tube, but they removed it pretty much immediately, and I have absolutely no memory of it (or the conversation I had with my wife that evening). A week or so follows in hospital, which is a bit rough, but you’re not immobile. In fact, they want you walking as soon as possible (preferably from day 2).
There are restrictions on using your arms: not pushing yourself up out of bed or a chair, not lifting anything more than half a gallon of milk, etc. These do mean she’ll require some level of help at home for the first 6 weeks. Once the breastbone is stabilised you can start to do more, but it won’t be 100% for about 6 months. (I’m in that in-between now, approaching 4 months.)
So it’s a pretty major operation (mine was 6 hours for 2 valves, so it’s probably closer to 7 hours for all 4). But it’s something the surgical teams do day in day out, so it’s a well-known path. And the staff really do look after you quite well. I’d be happy to answer any other questions regarding my experience that you (or your sister) might have.
Really appreciate your honesty - thankyou so much. 💖🙏I'm seeing a cardiologists on the 9th after a very long anxious wait since I had my MRI back in October.
I'm hoping he's going to explain the results of both MRI & Echocardiogram in detail & then inform me of what can be done with regards to my Mitral & Tricuspid valve regurgitations, severe ventricle damage & persistent afib but just like this gentleman's sister,
OHS absolutely terrifies me & I'm not ashamed to admit that.
Jim P,
I know that you must want only the very best for your sister but please do listen to her real fears without assuming that she's being overly dramatic. Please try to talk to her about the pros & cons of surgery calmly & with empathy.
I have had a triple Bypass operation which they do cut you down the middle etc , I am an anxious person as well but what I would have wanted to be told and was told is
First they do these ops every day and you are in safe hands
They must think you are fit enough and able to have a good recovery or they would not be doing the op so that is positive
How they do the op you will not know what they are doing you will be asleep and by the time you wake up it will be done tell her to stop over thinking what they will do and that loads of people are having this op daily
There will be a recovery time but there will be support if she lives alone could or would she want to go somewhere like a care home just a short stay to be looked after till she feels fit enough to go home some people do if there is somewhere to accommodate this depending where you live
If she would rather go home after could you arrange that yourself or careers go in every day ?
Been well planned can really help putting as much support in place as you can while she recovers
I had a tube down my throat and this was something I was afraid of yet I never knew I had it in as well as never realised they had taken it out you are quite drugged up and for a lot they do not feel a thing and even if they do it is a matter of seconds
She will have lots of pain relief and they will look after her so well
Ask her what the outcome would be if they did not do this op and point out that a few months of recovery are going to be well worth it and she will feel so much better
If you can talk with the Doctors when she goes in and tell them about all her fears they will do all they can to help her
Have a look if there are any befriending services in her area it maybe someone giving her a phone call twice a week but when you are on your own that call can mean such a lot
Hope other members will answer and give you some advice
If you need to know anything else just ask and I am sure someone will answer and if you can keep us updated it would be nice to know how you are all getting on x
Dear sir, your sister is terrified which is natural. I have had heart surgery and was terrified. I was not dramatic but afraid of the unknown. Now I am wiser and stronger having gone through it. You are right to ask for advice, your sister will be ok, it feels like a storm before the calm. The doctors know what she is going through and will give her reassurance. She will find her brave, and accept that it is to save her life.
My partner has just had surgery to replace his aortic root and valve, this is his third surgery for the same valve and it took nearly 10 hours. Your sisters fears are real, she is not being over dramatic, anything to do with the heart is scary. Try to reassure her that they do heart valve replacements every day and thankfully the UK has some phenominal surgeons. My partner is under Barts and we cannot fault the treatment and care he received. He was in hosp 11 days and came out on 22 Dec. He is recovering well, but still in a fair bit of pain. Your sister will definitely need some form of care plan in place as she will be very restricted in what she can do. She will get out of breath as the slightest movement but small walks will help, even if its around the garden to get some fresh air. I wish her well and totally get her fears, I have lived with my partners fears each time, but obviously this time, a 3rd surgery was much higher risk.
The fear of the surgery is only natural and if your sister is an anxious person this will seem very overwhelming for her. It's a big operation but she really won't know anything about it and when you wake up it feels like a click of the fingers....in fact...in my head I still thought I was waiting for my surgery. My big fear was of the ventilation tube but that was out and I was in recovery and didn't even know it had been there. You aren't aware they put it in either so unless there are complications the pipe shouldn't be there when she comes out of surgery. Once in hospital the cardiac team and nursing staff are fantastic and my experience was that they are very calming. This operation is a routine one for the surgeon, carried out frequently and with a very high success rate. I don't think anyone will say recovery is easy. It's major surgery and I would think your sister will need some initial assistance, especially with things like housework as she shouldn't be lifting or pushing. Perhaps it could be arranged for some pre cooked meals to be stocked up for her too. Even though it's major surgery she should still try to be active with daily walking that needs to be built up slowly. They have you up out of bed fairly quickly in hospital. Being anxious I think it will definitely help to have someone at home with her initially or someone that can call in regularly to help or assist her. Even though she must try to be mobile and walk she will also need a lot of rest. Everything will be discussed with her before she leaves hospital but if she is so anxious I would suggest perhaps a list of questions for her to ask before she is discharged about her recovery and what she needs in the home.Even though the operation will seem very daunting for her my advice would be the alternative of not having it is even more scary. So many have valve operations and also lead normal lives after. Some have to make different adjustments but this surgery is obviously going to be important for her to have. I hope you get lots of replies to help allay her fears and this is a really good forum for support so why don't you see if she might join it herself. Take care x
It is a pretty dramatic op. I had open heart surgery in 2023. When I heard that this might be necessary, I started researching and even the very factual guides (like bhf.org.uk/informationsuppo... terrified me. I'd never had a filling or broken a bone or had a baby, and had no experience as an inpatient. Things like being intubated (tube down the throat) or catherised were horrific concepts to me. I completely understand your sister's anxiety. I spent time looking at my body and trying to imagine them opening ribs and the resulting damage. My French boss called it 'being opened up like a lobster'! Now, the scar is just another part of who I am.
If it helps, I blogged from within the hospital during my recovery and that shows that you're dosed up to the eyes with pain relief afterwards and able to do pretty well from the early days. They really do take great care of you. holeyunexpected.wordpress.c...
I appreciate I am a bit younger than your sister, but if she's relatively healthy and mobile now, her prospects for a smooth recovery are good. Do talk to her about the practical support she'll need. It'll give you both something to focus on that you can control, which I find helps with anxiety. And the medical teams will help with the rest. Good luck to you both.
Honoured you've dipped into the blog. It kept me sane during the awful Waiting For Surgery and the uneasy recovery. Sure! You can see the scar in my most recent post: wp.me/peumX0-kf
My surgeon said 'I'll try and give you a small scar' and my understanding is that he cut where he had to and bent my breastbone above the ribs, rather than cutting through.
As for the valve, because I had a hole in my heart my valves had been pulled out of shape by the fluid dynamics of my abnormal heart. The valves had been examined on a few echos and the surgeon was in two minds about whether the valve would improve once the hole was closed and once he'd got me open he decided it wasn't too bad and would probably recover, and that seems to be the way things are going - I've not had many check ups since and it'll be a couple of years before we see how things settle.
So am I right in thinking that your valve leaflets were not closing sufficiently which was causing valve regurgitation, but when the hole was repaired it pulled the valve leaflets back into place?
Correct on both counts! My heart was very dilated on the right side and I had no idea anything was wrong until an unrelated x-ray and a radiology tech flagged a 'mass' in my chest which resulted in an eventual referral to the adult congenital defect team. My hole was 'very big' and should have been fixed before it got this bad, but I'd been fit and well and had no reason to think anything was amiss.
Your level of insight suggested to me that valve issues might be known to you and looking at your profile I see there's a possibility that you'll have some sort of surgery in the future. I'm very happy to answer any questions about surgery if that's at all helpful to you.
My heart is also dilated on the right side but also slightly on the left side too. I have severe tricuspid valve regurgitations & moderate mitral valve regurgitation, left & right ventricle damage & also persistent afib but do have many symptoms, including oedema, breathlessness, & extreme fatigue. Was only half diagnosed after echocardiogram but hopefully will be told MRI results next Thurdsay when I get to see my cardiologist for the first time since being dismissed from hospital on the 11th of September. It must have been very strange for you being told you have major heart problems but you had no symptoms,
but I do think it was a blessing that you'd had no prior surgeries before OHS.
I have had surgery in the past. Nothing quite as serious as OHS but I do know how long recovery can take, plus possible complications & I have suffered with severe pain in the past.
Sometimes I do wonder if ignorance is bliss where certain surgeries are concerned,
but unfortunately I'm the sort of person who has an inherent need to know as much as possible about anything that concerns me.
I think you're a brave, selfless young woman revealing you scar in your blogs publicy to help others.
Thankyou so much for offering me help & guidance regarding your experience of OHS & recovery if needed. 💖
Wow, that sounds like a lot in terms of symptoms, I'm sorry you're dealing with all of that and really do hope you get some answers on Thursday. It's a long time to have been discharged and waiting to know what's going on.
I'm sorry you've had previous surgeries and the challenges and pain those have provoked. My experience with OHS is that they're generous with doling out pain relief and after the first week or so the pain was more soreness and stiffness if I stayed still for too long. There is also a tonne of info out there on OHS but I'd stress that your mileage may vary. I got very anxious reading about outcomes and hurdles others had faced but my recovery was very different with different hurdles! As the stoics say "We suffer more in imagination than our reality". And I was a little jealous of people with symptoms going for surgery and knowing ultimately they'd feel better as a result. After 18 months I'm just about as fit as I was before the surgery,
Thank you - those are very kind words. I wrote to help process what was going on and keep the extended family up to date with progress, but if it helps anyone else then that's a bonus. And now we're mutually followed one another, I hope to see an update from you soon.
Being told we need open heart surgery is probably one of the most frightening things we can hear, the brain goes into overdrive the ground opens up under our feet and we go into free fall! In some ways you’re sister is right her life will now change the life we had flys out of the window and this new life flys in!
First thing is for her to follow all the instructions she will be given, no arms above her head no lifting anything heavier than half a kettle of water, this is because are breastbone is wired up and like any broken bone it takes time to heal. Yes she will have a tube down her throat because she will be on bypass, but she will not be aware of this. She will wake up in ICU with lots of tubes attached but these will be removed one by one, the last is normally the pacing wires , these are put into place incase there’s a need for the heart to be regulated. As her brother you need to be aware that when she gets home she will probably be emotional, her brain is still wondering what as happened, her heart as been stopped and work on, not something that happens every day! Please tell her she will not be in any pain, they are very good at making sure she will be comfortable. She will need a rolled up towel, I had a baby blanket ( still have it sitting on my bed as a reminder) this is to hold against her chest if she needs to cough or sneeze.
She will be given breathing exercises in hospital, remember her lungs will have been collapsed while on bypass, so all the little pockets need to be re inflated. I called them huffing and puffing! Tell her to keep doing them when she gets home they really do help. Walking every day is a must, after a while I used to count lamp posts! Try and get to the next one every time I was out! Silly I know but it works.
It’s been over 8 years since my surgery, and every day I thank my medical team for giving me these extra years, I have seen my grandchildren thrive which is a blessing. I am a wee bit younger than your sister but not much! There is life after surgery and a great life. Her medical team do this as their day job, she will be so well looked after. Just follow all they tell her and she will be fine.
I can only give my experience. I was 82, and had Aortic Valve replacement and triple by-pass. I knew nothing about the operation, but when I awoke there was a breathing tube down my throat which was a very uncomfortable feeling but the nurse removed it within minutes. After that there was no great pain and I declined pain control medications after the first few days because not needed. Yes, there is a large slit down your chest, but as I say, in my case it was uncomfortable rather than painful, as are all of the tubes sticking out of you. which are progressively removed over--in my case--about 2 weeks. You are very restricted in movement immediately afterwards, but the rehab staff have you moving about within a day or two, slowly and hesitantly and with support initially. They encouraged me to get out of bed and use a chair, using the prescribed procedure to raise yourself from bed. Then after leaving the hospital and about 3 weeks after the operation I had my first follow-up with the surgeon and cardiologist, and had to show the rehab team that I could do exercise on the bicycle, which was easy. Another month and I had to show the rehab team that I could walk unaided for a reasonable period--again ok. You have to be careful not to stumble, but within 4 months, certainly not the many months that your sister fears, I was almost completely back to normal, climbing stairs and walking without any difficulty. Please reassure your sister that she can expect a tough though steadily improving 2 or 3 months, and will certainly need help during the first period of that, but then vastly better health. For me, the worst part of the experience was the total lack of appetite that I had. I was told that I must eat the whites of 2 eggs at every meal, and that seemed an enormous quantity, and after being forced by my wife to eat them, I could not even contemplate anything more. I could use some of that reduction in appetite now.
Thank you all for your experiences - fascinating reading!
This will, of course, inevitably be a very scary experience for my sister and my concern is that she is stressing herself out more and more by refusing to look into these questions and ask for experiences from others for herself.
We cannot discuss it at all - she snaps at me and hangs up if I try to raise the subject however cautiously and respectfully.
I really wish that it was possible to listen to her concerns etc but she shuts down every conversation immediately and has nobody else with whom she could discuss such issues.
(Our other sister will be very "hands on" and supportive - but not so much in terms of talking about stressful issues.)
I have undergone two fairly substantial operations myself - only abdominal so no ribs or heart involved - and dealt with my inevitable anxieties by trusting in the medics and reminding myself that they were to extend my likely life-span.
As difficult as it might seem for you & your other sister, perhaps your sister has come to terms with the fact that If she doesn't have OHS to repair her valves she will more than likely pass away much sooner than if she had the surgery, have you calmly spoken to her about how long she may have to live if she refuses surgery? No-one can decide for us.
If your sister really doesn't want to go through OHS then perhaps it would be better if you accepted that & you come to terms with her decision.
You never know,
if you do decide to back off & you tell your sister that you'd support her either way,
it might be a case of reverse psychology & she may change her mind.
I do hope that whatever route your sister decides for her future will be accepted & respected though.
Hi Jim, I don't think your sister is being melodramatic by any means, if anything she's realistic and seems to have an understanding of what lies ahead. As much as people can offer assurance that it'll work out fine, you can't get away from the fact that it's major surgery, and she's right in her assertions.I've had OHS on three occasions, with multiple valve replacements, and I could write different accounts varying from Good, Not so Bad to Ugly. Each was different, but, I'm lucky that I'm one of those that thrive on surgery and know how to recover. That said I'm not sure I'd fancy having surgery first time at 79. Age is a factor as is general health and shouldn't be underestimated.
I'm not one for reading up or watching videos on the matter, I just turn up and let them get on with it, which works for me. Maybe that's what she wants and needs.
Regards to the extent of the surgery, there is greater risk involved in dealing with all four valves as well as the Aorta at the same time.
Also be under no illusion, following discharge from hospital she will need help.
I can totally understand your sisters anxiety . I too am facing valve op aged 78. I read people’s experiences on this app to try to get my head around it but some days it only raises my anxiety levels despite all the helpful advice and reassurance. Meds sorted my breathlessness and so I have no symptoms that affect my everyday life but my cardio certain that mitral valve needs sorted and that I’ve been in denial since he advised an op a year ago. His advice is to have op while still relatively fit and healthy rather than delay . Delay may be inevitable anyway due to waiting lists. I don’t cope well with uncertainty !
Meds prescribed by cardiologist. He increased my bisoprolol to 3.75, added Digoxin 125mcg, and furosemide 40mg xtwice a day. I think the diuretic ( furosemide) made the biggest difference.
Update. Sister had an appointment yesterday with her Cardiologist who - allegedly - said that she does not need the operation yet and that the valves have an operational life expectancy of 10 years so has referred her for more ECG etc type follow up. Sounds like good news to me.But she became very confrontational and asked what was he waiting for - her to crawl on her knees and beg? Etc.
Sadly, this exactly the kind of attitude she has to this whole topic, as well as other areas of her life.
Our phone conversation last night was very stressful for both of us, she virtually hung up on me.
At this point, I need to give her and myself a break.
Whatever I say seems to increase her fear and stress levels however supportive I try to be.
The Cardiologist allegedly also said that her Aorta is not blocked but "stretched."
I do not understand this at all and she was unable to explain it.
She gets "fluttering" in her heart area she says.
I wonder whether her stress levels are causing some kind of tachycardia or similar but the conversation broke down at this point.
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