I'm currently on the waiting list for open heart surgery to have aortic valve replacement and aortic root surgery. I had a pre op assessment on 9th June 2020 but wasn't given a date for the operation. I tried to push for a date whilst thereat the ore op but was told no date had been set.
My question is how long after pre op am I likely to have surgery? I was told I have to self isolate for 14 days before so should be notified of the surgery date 2week before.
Also if anyone else is going through the same or has gone through similar op your advice is very much welcome. 🙂. I will be 29yo next week and don't know anyone who has had or is having anything like this so it's hard to actually speak to someone with an understanding as such of what I am currently situated with.
Also what happened within the week after the op were you beingd dressed and washed by a nurse? Or was you able to do this yourself?
Thank you
Mandy
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I too am in need of an AVR procedure, along with repairs to LV and Artery Bypass for 3 arteries. I have been advised that a surgeon has agreed to take on my case and can expect an appointment for a 'Pre-Op' interivew.
I am hoping to start studies at Uni in September/ October and have been advised that I might stirugle with being present for the first few weeks or months.
I hope this timescale helps you with your question. It does seem like the real answer is similar to that of the length of a piece of string. It doesn't help that the major heart hospitals have been turned over to specialist care for Covid 19 needs. Maybe they are hoping to return them back to heart surgery sooner than later - and so facilitate more procedures.
I wish you well in what ever scenario resolves your problems.
Thank you for your reply. It's somewhat nice to know someone is going through something similar although the circumstances aren't too good.
Thank you for that. That does give sight of surgery not being too far away, however like you said who actually knows when the date is especially due to the current world situation.
I am currently studying and am eager to know the date as i'd like to try and work my study around all of this than have to take time out and catch up later.
If it helps, I have spoken to my course leader about this rather sudden change in events. He advised that Covid 19 was my friend in this situation, Because so much study is being done via 'virtual' means - it makes it easier to study from hospital or home whilst recovering, and it also makes it easier to allow extensions to assignments with verifiable reasons for such needs. Also, he pointed out they may ahve to make provisions for students who may not be able to attened lectures due to shielding requirements.
I would speak to your course leader and tutors and explain your situation - it may also help you to reduce some fo thsoe worries you might have. Also, study might provide suitable relief to the discomfort that can be expected post op and during the early days of recovery.
Yes that's true in regards to virtual learning we've currently moved to this so that's a benefit.
My skills coach if aware that I will be having the op and has offered a 3 month break which is reassuring but ideally I'd like to avoid this, although I know I may have to give in and take some time out depending on how I feel.
Welcome to the forum, I had AVR and bypass nearly 4 years ago, I was 68 so more than double your age! so sorry you have to face this at such a young age.
The time scale for when you are in hospital, Well I will tell you about mine, the first 24 hour in ICU and then 2 days in HDU, the rest on the ward. I was discharged on day 8 after surgery. As for what you are able to do, ICU the nurse gives you a lovely wash, but 12 hours after the op physio was there having me marching on the spot. As your drains come out you will be able to take yourself for a shower and the toilet once the catheter is out. The last thing out for me was the pacing wires. That was the day before discharge.
Remember to pack pjs with front fastening tops they don’t want you lifting your arms above your head until the sternum is healed 6-8 weeks. Also no lifting anything heavier than half a kettle of water.
When you get home remember baby steps, gentle walking and listen to your body it will tell you when it needs to rest.
If there is anything you want to know just post and one of us will be along to answer you. There are lots of us here that have been through open heart surgery, and will listen.
Remember the team that will be looking after you do this as their day job.
Thank you for the detailed breakdown of your post op days that's really helpful and gives ideal expectations. I'll be honest I'm quite laid back and had the assumption I'd breeze through it but after reading your experience I will definitely take it step by step.
I'm currently on the hunt for front fastening bras although I'm curious as to how they will sit on the sternum.
Thank you so much that's reassuring to think of the positives.
Front fastening bras were ok I didn’t have a problem with rubbing though I know some on the forum have, they said a soft hanky placed over the wound worked well.
It’s not for long just until things are healed, you will be fine.
I was admitted to hospital and had the tests, then the operation without going home. If we say the op was day 1 then days 2 and 3 were in icu/hdu and i hardly knew what was going on. Day 4 i become conscious. Nurses helped me to stand up. I had to call nurses just to sit up in bed. Day 5 i made my own way to the loo, and got told off for not calling for help. Didnt want to eat much. Days 6 and 7 i was walking a few meters within my room. But the anaesthetic was stll heavily
in my system. Increased my few meters walking. The wound did not hurt. But many muscles in the shoulders and arms started to hurt a bit. I am assured this is normal. Day 8 home. I packed my on case .I was taken home by ambulance, a proper lay down ambulance not a bus.
I could dress myself, slowly.
Nurse gave me a shower about day 5. I washed and showered myself days 7 and 8.. I was very forgetful and slow thinking. Wish i had taken in more info on after care.
As a generalization, i did not grasp what a major operation i was having.
I am now week 6. Shower, dress no problem. But need lots of sleep. Can not use vacuum, mustnt lift anything. Make a cup of tea but i dont prepare meals. And need a clean shirt every day, so laundry is mounting up.
Wow! That must have been an experience although I think I'd prefer to have it all done in one sitting as such.
Thank you for the break down of your day to day recovery post op this is super helpful. I was thinking of taking some books but as you said by day 4 you became conscious so I may just stick with the tablet and Netflix for the first few days.
It's amazing to see how quick you were able to move about days after the surgery as I can imagine it must be uncomfortable.
I too don't think I've grasps how major of an operation this is or at least when I'd wrote this post I certainly didn't. It's great to finally speak with others about this and share experiences.
Clean shirt - noted! This is helpful thankyou. I'll be sure to get some more tops to have on standby.
I'll be moving back in with my mom for a few weeks to avoid the urge to try cleaning the house and she'll be making the meals.
Thank you for replying. You given great detail of what to expect.
Good luck with your recovery. I hope you feel the benefits of the operation soon.
The pre op stuff was not bad at all. Echo cardiogram/lung function tests/scan. Mine were all done on day 1 and the consultant said he would go ahead, didnt need the angiogram, so I had two days free.
He discussed whether to do a TAVI or open heart surgery. He wanted me to decide but I dont have the knowledge ! So another consultant came in and he said it should be open heart. As it turned out, this was right. If I had the TAVI then they would have needed a second operation, probably straight away.
I had weeks to live. My valve was totally solid. Lucky I have a very strong heart. But this concentrated my mind and actually made the pre ops etc much easier. I also had a relapse on day 2 or 3, so it was back to ICU. This was a big deal, just like watching casualty on TV. I thought it was the end, but I really didnt want to die in the ICU. The relapse was due to my heart deciding to beat over 200bpm. They said this was not unusual. I was over the worst in two hours.
I had my own room.
I was due to go NHS at Basildon and I would have had my own room there. Maybe the preops would be in the ward. But Basildon wasn't working and the delay expected was 2 to 4 months. I didnt have 4 months. Then I was due to go to West Brompton. But they closed before I got an appointment. You will be in a much happier situation as all these places are opening up. And keen to treat Mandy and others !
Yes it was uncomfortable to move. It still is uncomfortable at 6 weeks post op. You need to be with Mum. As Wendy writes, you cant lie on your side nor your front, so you need at least five pillows so you can sleep sitting up. You need a comfy mattress as you spend too much time sitting. I have a very firm mattress and I swapped it for a firm mattress, sprung pockets. So our next guests will get the very firm mattress!
I didnt want to read much. I did read my bible as I wanted to see what it says about corona virus. I also took my brand new apple ipad. It is my first tablet and I wanted to learn to use it. I also used my mobile phone a lot. I hardly ever use a mobile phone, so this was a surprise. And an £80 charge for the calls ! The hospital phone wasn't working and would probably have cost about the same. Being in hospital without visitors means more contact by phone. The staff were utterly brilliant. They knew how hard it is to be in hospital alone (I couldn't leave my room) and they popped in frequently. Janitors, cleaners , engineers, HCAs, nurses, doctors and catering staff etc etc all came and said hello.
And they know you will be likely to cry at some stage. In fact they knew before I did. That was before the op.
I knew it would be up to me to get myself better. So I was determined to do everything the physio suggested. This really wasn't much. 20 minutes a day.
I took two pairs of PJs and two dressing gowns, I needed a third pair of PJs so landed up in a horrid hospital thing. But they supplied me with a dressing gown, so I didnt need either.
This is really helpful coming on this site. And especially telling you all I can think of about my 11 days in hospital. I dont like to tell other people too much.
Last comment for today. My scar is just 8cm long. What brilliant surgeons. No idea how they did that. It was a number 26 valve, whatever that means. I asked that I did not get told details. The senior nurse attended the op for her own education (nice touch she asked me if it was OK) and she so wanted to talk about the blow by blow op. And I didnt want to know. I did ask the time taken and it was 4 hours.
Time for me to get my sleep. I am "off" the painkillers which is a major step towards recovery.
I’ve had two AVR ops and had my aortic root wrapped. Can’t give you much help re timescales but they used to list you within two weeks of your pre-op but I think the Coronavirus has changed a lot of things.
To get yourself ready for the op, get yourself a v-shaped pillow or similar to help you sleep once you get home, as it is very uncomfortable to lie down flat initially. Pillows or a spare duvet would work if you can’t get one. Get some comfy non-wired bras, front fastening even better. Also practice getting up and down from your armchair or settee without using your arms. Sounds odd but you really don’t want to put pressure through your arms as your chest will be extremely painful if you do. Always have a rolled up towel or pillow/cushion to hand for you to hug to your chest when coughing or sneezing, helps reduce the pain.
Take some books/kindle, puzzle books, MP3 player etc in with you as it can be very boring. Having said that, don’t be surprised if initially you have trouble concentrating or remembering things, it’s a side effect of the op/anaesthetic and does improve over time (varies from person to person). Don’t forget your chargers aswell.
On the whole you will be in hospital for about a week and they normally won’t let you go home until you are mobile and can manage stairs (unless you live in a bungalow). Ideally they like you to have someone at home with you for at least the first week. You shouldn’t lift anything heavier than a half filled kettle to start with. It’s a good idea to get some ready meals in the freezer so that you don’t have to cook, also it varies from day to day what your appetite is like, so frozen meals mean you aren’t wasting anything.
Whilst in hospital and when you get home make sure you take the painkillers and ask for more if needed. You will feel like you’ve been run over by a stream roller to start with and if you’re in pain you won’t do the breathing and walking exercises you need to do. It is not a time for heroics, you can cut them down gradually as you improve. I was down to morning and evening doses only after about three weeks. As Pauline has said, baby steps. If you overdo it you will know about it, it hurts!
This probably makes it sound really daunting, but remember your surgeon will have done loads of these ops and the staff on the ward are very experienced at looking after cardiac patients. Hopefully you’ll have your date soon and the wait will be over. In some respects the wait for the op is the worst part as your mind goes into overdrive. If you have any questions just ask, there are plenty of us on here who have been through it.
Thanks for that. I've just placed an order with Amazon for the v shape pillow and a soft small blanket to roll up and use to hold against my chest when coughing and sneezing. Unfortunately when I sneeze I do 6 minimum so this will be interesting. 😁
Can sympathise re sneezing, I’m the same! I have found that if I can feel a sneeze coming if I pinch the bridge of my nose it often stops the sneeze. Very useful post-op!
Keep us posted about your op and don’t forget we’re here if you have any questions.
Hi Mandy, AVR Dec 2018 aged 39, I also had endocarditis so I had stay of about 3 months in hospital. I was very weak before my surgery, I couldn't walk the length of the ward because of my damaged valve but what a difference surgery has made. I am up walking daily and currently doing the couch to 5K, never thought I would have done that even before I had any heart issues!! As above i echo all the advice. A tip from me would be to get yourself an extra long charging cables for your devices and have Netflix on a tablet or mobile to help pass the time. Sorry in a rush so cant write much more now but if you've any questions please ask.😀
I've placed and still am placing many orders since writing this post from the suggestions given 😁.
3 month in hospital is a long time I can only imagine how you coped 😳.
Thanks for the advice on the long charger cable I'll definitely invest in one.
Haha I've actually downloaded the couch to 5k all ready for when I've had the op and recovered. It's little things like this that are making me eager to get the surgery over and done with.
Hi Mandy, first off good luck! The waiting is almost the worst bit in my book. I had my AVR and aneurysm repair in Dec 2018 at age 50. If it's any help I was in and out in a week and had assumed that I would come home something of an invalid and confined to bed but (while I felt lucky in that I had few if any complications) none of that. I could wash and dress myself, go up and downstairs, make myself a plate of food (being careful though not to lift stuff), park myself on the sofa by myself.
So I was way more "able" than I had thought I was going to be. In fact, we bought loads of cushion support items and stuff that we ended up barely using. The main healing is the breast bone needing to knit together so everything else - legs and arms etc - were all still working normally!
For me it went something like this:
Day 1 - arrive at hospital (St Thomas) various pre-op stuff, shaving of chest etc, nervous waiting, nil by mouth from early evening
Day 2 - op first thing (I was first on the list), into ICU, wake up late afternoon early evening, spend the night in ICU
Day 3 - still in ICU. I was recovering well but there was a question-mark if I could go back to the high dependency unit on the ward because of a lack of beds. Believe me, by that point I really did want to be in HDU because of the noise and bustle in ICU! Fortunately a bed came free right at the end of the day.
Day 4 - overnight in the HDU (the quiet was bliss after ICU!) and then late afternoon tubes taken out of neck and I actually walked (though I felt like a bus had hit me) from the HDU down to the ward by myself (well on the arm of the nurse). Family came to vist that evening (my wife had been coming alone by that point)
Day 5-6 - on ward recovering. You're encouraged to get out of bed quickly (after all they want it back, but it is also good for recovery) and to sit in the chair by the bed if/when you can. Then to get up and walk around the ward and start to rebuild strength slowly. I was astonished at the improvement in heart function (having not actually felt I had any symptoms to speak of pre-op). They'll also (sorry) try and get your bowel function going again at this point.
Day 6 - because I was doing so well they were talking about discharge already (my siblings were aghast because none of them had managed to sort out a visit, having assumed I would be in there for days yet). But in the event I started running a fever (a small lung infection) that needed antibiotics to clear it up.
Day 7 - a week, almost to the second we had come in, discharged and home
Obviously, everyone is different and heals and recovers differently and, as I say, I had no complications to speak of - and things like atrial fibrillation are quite common initially, which may set you back. But for me, yes I was sore and tired, but it was actually quite straightforward and, while the terror beforehand was dreadful, in fact the reality wasn't as bad as I had feared.
Obviously, too, this was all pre-coronavirus, which means a lot may have changed. I had all my pre-op stuff in the August and the operation only happened the following December, so right at the limit of what they say, so it was a frustrating time to sit out and wait.
In terms of advice:
- If you haven't already, start practising standing up from sitting without using your arms. The main healing, as I say, is the breastbone knitting back together, so you can't lift anything heavier than half a kettle of water for the first six weeks, or press up with your arms
- I found a maternity wedge cushion handy support for under the chest while sleeping (initally on your back, which I hated) then gradually over time turning on to your side and then, as things healed, on to my front which I preferred
- I also rolled up a small towel and tied it and had it as a support to carry around because if you cough, sneeze or laugh it is painful (I was terrified of the sneezing as I have regular sneezing fits, often 10-20 at a time but, for some reason, for the whole period I never sneezed once - not sure how that works psychologically but I was very grateful!)
- Accept you will be tired and sore and just be patient. I was given paracetamol and some cocodamol for emergencies but in the event only needed the cocodamol once. I gradually weaned myself off the paracetamol, but took my time as it's not a whose toughest competition! I was in a fog of exhaustion for the first six weeks or so but also gradually, within a few days, was out walking, initially just around the block with my wife and then slowly increasing until I was doing perhaps 40 minutes a day within a month. They advise you if you can to walk and breathe deeply as much as you can to rebuild not just yourself physically but also your lung function, which takes a battering.
I also had some pdfs from St Thomas' that I found useful, which are here if helpful for you:
But most of all, as I say, good luck. The waiting and build-up is dreadful but, while a massive deal for us who go through it, for the surgical teams this is a very straightforward operation, almost bread and butter, these days, and so I'm sure you'll be in good hands, in and out in no time and home and on the mend. And if you have any questions very happy to help if I can, and feel free to DM me.
I really appreciate your day to day recovery detailing day by day from the first week post op. This is great and gives a clear understanding of what to expect (although I know my recovery may differ slightly). I'll definitely be looking back through the replies I've received once I've had the surgery to see how I compare to each experience.
For some reason when I try and imitate how I will walk after surgery I seem to act as though I've broken my neck 😂.
I'll definitely get some practice on gettung in and out of the chair whilst waiting thanks for that.
I've ordered a v shape pillow from the advice of the other lovely replies I've had. I usually sleep on my back so this should be a doddle (so she says).
😂 I bet you were grateful to have avoided the sneezing episodes there a pain without having a wound so I can only imagine.
Thanks for sending the pdfs I'll have a read through these tonight.
I've been lucky to not have symptoms and so the not being able to be continuously on the move will probably be the most frustrating part. I'll take your advice on this. Slow but steady wins the race.
I'll have to have the surgery done again on my valve due to wear and tear over the years when they will then put in a mechanical valve. I'm impressed with how quick this all is from surgery to going home in a week (dependant on complications occurring).
Hi Brand. When you wake up in ICU yes as you're naturally on a ventilator during the op, and it's horrid, but mine was removed very swiftly thankfully. But otherwise no. They insert a catheter essentially into a vein in your neck through which they pour in loads of drugs so no need to be injecting you all the time - it's a bit like one of those dangly multiple phone chargers. It doesn't look pretty but is very effective! When it comes off just needs a small plaster over it for a bit. So I meant it was that they took out just before the children visited (thankfully). If that helps? Cheers Nic x
If it's any help I'm exactly the same! They insert down your throat for an echo? Cripes, that's grim and glad to say I've never had to have that. Of course I have no recollection of it happening during the op itself, thankfully! But yes definitely worth discussing. And good luck too!
The Echo Cardiogram is essentially an Endoscopy, except they use an Ultrasound device instead of a camera. Thry take it down to level with your heart and watch it at work.
I had to have an Endoscopy to check my throat was wide enough to take the E.C. device. That was done as a result of notes on my records from a previous incidence of needing an Endoscopy.
Even then, they had to twist things about and turn my head and neck to get it to fit...
Funny what things worry us about treatment, specifically surgery. While I'm asleep, I really don;t care waht they do - but once I'm awake
Hi mandy I'm 33 but was 32 when I had a cardiac arrest in October last year I was given the aortic valve and route replacement surgery and it wasn't as bad as I had feared for most of my life as I knew I would have to have it one day just not as soon as I did and in such dramatic circumstances but I was out of bed the next day and made to sit in a chair everyday for about a week before they wanted me up and going for a walk but they have the cardiac physios come round to try to get you out of bed and moving it's tough going but it's worth it in the long run as for washing and dressing they helped when it was needed but after a couple of days I was doing it myself I suggest taking some loose tops in with you as its very exhausting and slightly painful and uncomfortable but needs to be done but loose comfortable clothing is the one but on the whole it wasn't anywhere near as painful as I believed it would be I hope this helps if there's anything else I can help with feel free to ask or message x hope all is well and try not to panic and threat you will be in the best hands possible once in that operating theatre x
Hi Mandy2020 ! Am 37 so also quite young and waiting for valve-sparing aortic root replacement. Looks like we will be going through this at similar times! All the best! x
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