I have been on this community for quite some time now. I am 40 and today I will finally be admitted to the hospital to have my aortic valve replaced on Wednesday. It has been a long wait, nearly a year, and I feel as it is happening at the right time. My symptoms got worse in the last months, I get palpitations and arrhythmias that leave me breathless and often I nearly black out, due to some seizure like symptoms (anyone getting the same due to long pause between beats?).
I am obviously concerned for the outcome of the procedure (I am having the Ross procedure done) and I would love if anyone could share their experience or advice how to manage while in the hospital and during the recovery. Thank you so much to everyone, Reading about all of you everyday made me feel less alone with my heart issues. Fabio
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Faub
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Dear Fabio. The worst bit is right now, those days waiting for the op.
I learnt how to use an iPad, which helped the time pass. I had a private room. No choice at the time.
On Wednesday you will need to shower and wash hair. A nurse will probably supervise. A male nurse in my case.
Then off you go to the ante room, I walked there but it was very near my ward. Then scratch scratch and whilst I was thinking, why won’t they put me to sleep (I hate needles), next thing I was waking up in ICU. You will be carefully monitored for a few days. Then the magical transformation will sink in. You can breath more easily. I was very keen to do the little exercises they will explain to you. And the recovery is starting. I didn’t get any rehab, due to covid, but you will be offered rehab which I would urge you to accept.
It is such a positive procedure. Wonderful really. And you are having the latest procedure, The Ross procedure. Ideal for you, being a youngster.
Mr Quarto is a leading expert with this procedure. He did my op, what a brilliant man and what super support staff. Are you by any chance at the Brompton ?
Your few days in hospital will be explained. If you try to remember all you are told then you will be recovering faster.
You will be given a Teddy, which is a large towel straight from a bale. You hug the teddy firmly to your chest which helps you to cough.
It is major surgery so there is some discomfort, finding how to get comfy. I am small and kept sliding down the bed. That’s about the worst experience.
I had a three hour journey home, so I opted for a private ambulance. Well worth the extra cost.
When home you must have someone to help you. Hospital staff will talk you though that requirement. Six weeks and then you manage better. 12 weeks and then you can start getting back to your previous life.
I am a big coward, but had no problems with the experience
Hi Colin, thank you so much for your reply, it really helps me putting things into perspective and manage my brain overthinking things.
I will indeed be at the Royal Brompton, under the care of Mr Hoschtitzky. I feel I am in very good hands, it's just all this covid communication over email and on the phone. I cannot wait to go there later and talk to some real people.
I had heart surgery already when I was 15 and I have some bad memories of 25 years ago about anaesthesia and waking up, but I bet in 25 years things have changed a lot and I am confident I will be great.
I actually cannot wait to see how I will feel afterwards, when the recovery happens and I can get back to my life, but with a heart functioning how it is supposed to....
I will keep you posted and thanks again for your support.
I was booked in to the Royal Brompton, as a patient of mr Quarto. But the hospital closed to cardio patients and I was then briefly in limbo. Every hospital was closed due to Covid except the fabulous Cromwell that took me in.Brompton highly recommended.
It was lovely to get in the hospital away from the Covid issues. Staff all had masks, but that was fine.
You will be given a big amount of anaesthetic as the op takes many hours. I think things have indeed improved and I doubt the anaesthetic will cause problems. It will anesthetise you for many many days, which is good as you will nicely drift in and out of sleep.
Yes you can look forward to a bit of quality life, just do all the rehab and comply with the notes that the hospital will give you.No lifting anything heavier than a half filled kettle. No lifting above your head etc etc etc.
I presume you have had the pre op tests, if not, then these will be done in the Brompton.
Do let us all know how things progress. Are you being driven to the Brompton , what was it like when you arrived and so on. Are you on a ward or in a single room.
Hello Colin, yes everyone here are extremely kind and professional, really reassuring environment. I had some of my pre-op tests done in the past months, and between today and tomorrow they will complete the picture a guess. I am in a ward, but the room I am in only has 3 beds, and only two are being used, so I am sharing with a lovely 88-year old gentleman.
I am lucky to live in London, so the Brompton is only a 20-minute drive from my place and I came in by taxi. Same plan for going back home
I shall keep you posted on how the surgery has gone and I thank you again for your support and all the info you have given me
I have been waiting 5 months to have a repair to the mitral valve and the tripusied valve have had all the tests angiogram etc do you think I will have to have them all done again as I’ve been so long on the waiting list due to covid.
Hello Fabio & Welcome
Love your name
I have no particular experience with your procedure but as always the lovely members that do I see are been supportive
But just wanted to say Welcome , Happy Birthday and all the best with your op
If you type AVR surgery into the search box at the top of the page , there's some quite useful advice on how to manage while in hospital & afterwards. Have your hospital given you a booklet to read about it ? Good luck, I'm sure you'll be fine x
Hi and thanks for your message. I have read a lot in the past days and months, but I wanted to have a bit of a run listening to real experiences by real people. I am having the surgeon visiting me tomorrow, and I will probably have all my questions aswered by him at that point.
I will definitely have a search in the forum for past posts related to the topic, thanks for the suggestion
All the best and I'll keep you updated on the surgery
The surgical team are coming to see me later today to talk me through the procedure. I will keep you posted if I have any further questions. Thanks for your support 😊
Just today to wait then your new life begins.That’s a big plus for your short journey home. I live in deepest rural Essex so the journey was a bit too much for me to face, hence the private ambulance.
Believe it or not, I have fond memories of the time in hospital.
Hi,As already said it's not as bad as you perceive although I had a straight replacement with a mechanical valve plus a graft to my ascending aorta, don't know how that compares to the Ross procedure. I remember my surgeon telling me that for OHS my op was routine.
Once you are out of hospital take it easy, do the breathing exercises and listen to your body, you need to give the breast bone time to heal, only light lifting etc.
Initially I didn't feel like doing anything mentally or physically, attention span was about 30 minutes max. Things do improve fairly quickly, I think I was surprised how much better I felt in 2 or 3 weeks although still a long way to go!
That was over 2 years ago, I was a fairly fit 49 at the time, I was back running 5k within the year and can now do them quicker than for a long time so all's good.
Thanks Andy, the Ross is a bit more complicated procedure and it involves swapping my defective aorta with my own pulmonary valve, which will then be replaced by a deceased donor one. I chose because I was a good candidate for it, it lasts a long time, gives excellent hemodynamics and no blood thinners at all. I am quite active, love to travel and I felt I was too young to start being in warfarin for life.
Thanks for your support and advice, I'll keep you posted 🙏
I want to wish you well with your AVR I had open heart surgery two years ago I got a mechanical valve and I need to take warfarin…
You will do amazing and be so much better just to walk without getting out of breath,
and the dizziness of the blackout will be better and just think to walk up stairs without getting out of breath I’m 20 years older than you, I really remember laughing out loudly to go up stairs without feeling breath less it was worth it big hugs
Thank you Madyy, that's exactly the sort of expectations I have at the moment. We adapt our life and fitness levels around how we feel, but thinking back to a few years ago, it has changed a lot. I look forward to be back feeling even better than before. Thanks for your nice thought
Hi Faub. So glad you can finally have your procedure done. Please let us know how it went once you have recovered and feeling able to tell us. Wishing you all the best for tomorrow. Take care.
Hi all, it seems I will have to wait a couple of more days, as my op has been moved to Friday, due to an emergency that came in this afternoon. It's fine, spoke to the surgeon, a very nice man. It looks he told me to think about a plan B, in case they cannot perform the Ross procedure, and despite I am young, he kinda made me understand that probably a mechanical valve would not be a good alternative to fit my active lifestyle. I am still obviously up for the Ross, but as an option B it looks like an inspiris resilia could be the one. Any thoughts?
Hi everyone, little update from. My surgery on day 4. The Ross procedure went like a charm, but I have a complete heart block, therefore been very poorly and on pacing since after the surgery. This. Morning should finally get and implantable pacemaker which will resolve the issue completely and keep the heart on the right path. I cannot thank you enough for all your support!! You hearties are truly amazing, and a special mention to all the doctors, consultants and nurses at the Royal Brompton hospital. You do really feel in safe hands all the time!
I hope the pacemaker resolves your issues and then you can can get back on the road to recovery. I too have an enlarged aorta but not in need of surgery as yet so have read your story with interest.
I hope this proceedure gives you a better quality of life.
Hello Joanne, it is so kind of you to ask. I was discharged from the Royal Brompton on Thursday 14th October and I am now recovering at home. It's going well, my resting heart rate is going down little by little, I take daily walks and I manage to get good sleep at night. My energy is nice and high in the morning and then it kinda goes down from mid afternoon, but that's part of the game. Wounds are healing nicely, I'm on 2.5 bisoprolol, 4mg candesartan and 75mg aspirin (only for 3 months). Considering the very big procedure, they did an excellent job on me. Kudos to everyone at the Brompton, best possible care I could have ever wished.
Hi Fabio hope this message finds you well. Am I correct in thinking you had the Ross / Pears procedure at the Brompton could you please say how your recovery has been and who you surgeon was.
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Post AVR: 12 weeks, post OHS.
