Hi all. I was on here last week as my son is to have his aortic valve replaced with an onyx mechanical valve.
We meet with his surgeon on Tuesday and I was wondering if any one could advice me on what to ask ? .I can think of a few things obvious ones as to why mechanical valve and how long will the operation last and how to hell am I going to sit through it all ( the last question I’ll keep to myself ) .
What happens to him straight after surgery ? recovery time and will he live a normal life .? I know with being on warfarin there will be a certain amount of things he can’t do.
Will having the artificial valve shorten his life ? I’m afraid of asking too much also as my son doesn’t want to know too much … dilemma!
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Mariawatters
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I would suggest that you write out your questions, see if you can cull any, then rewrite them in order of priority to you. See if any can be answered by research, say on this forum. When you have your definitive list you will be able to make best use of the limited time available with the surgeon. See if you can get a number to contact someone when other questions occur.Also, you will probably get a raft of information from the hospital nearer to the time of the operation, which will answer a lot of questions.
Hi. I was born with Tetralogy Of Fallots so had one OHS aged 3 months in 97 and in 2017 Pulmonary Valve Replacement Aged 20.
As per the poster above you may want to save some of your questions for when you reach pre-op assessment/ nearer the time. The key is to pace yourself. - it can be a long road from Surgeon Consultation to surgery.
You say your Son does not want to know too much. I think there comes a point when you need to know , however, having been through it once already as a young adult- I am a strong believer in only asking the questions necessary for the next step in the process. The next step may solely be getting your sons consent in priniciple to be added to a very long waiting list. If thats the case you can keep the questions high level and about just the op itself- not life afterwards. My Dad gave me that advice having done it for me as a baby but I did not listen and learnt the hard way. You really do not need to know about the Cardiac Rehab Programme until you have had the procedure. Equally you do not really need to know about ICU in detail when you are being asked consent to be added to a 9 month (pre-pandemic) waiting list (I found my pre-op assessment I got the opportunity to speak directly to the Intensiviost. This was about 8 week before op and was a much better timing). Also its worth thinking if the Surgeon is the best person to ask your question of. You will meet many professionals along the journey and many of them will be better placed to answer certain question as its the part of the journey they specialise in. In the case of my surgeon- he actually did not stick around 24 hours in my journey. However having a definitive list you wish to ask and who you wish to ask the question of is helpful.
RE: The question "How you will sit through it all?"- I have no answer for that. I know my Dad required 6 weeks notice to book annual leave and could not have parental leave as I was an adult. As my hospital gave me 14 days notice of the final surgery date he had to go to work. He was a doctor providing on call imaging support for an operating theatre where they were doing a 10/11 hr operation on a child's spine. I tried asking him that exact question you asked yourself - the only answer he would give me was he was going to be more use once I was discharged. I am not sure thats a truthful answer.
Thank you . I think they are hoping to have the surgery in the new year .His MRI 2 years ago showed the valve was deteriorating but his follow up with his consultant was cancelled due to Covid and it was all missed. It was only when he finally had his face to face meeting and a rushed echo scan that alarm bells went of . So we haven’t had time to process it all . I think you’re advise on taking it one step at a time is the way to go .When he was young we were able to return to his ward and wait in him to come back to us . I won’t be able to leave the hospital . They have a quiet room where we can sit and at least we can be near him .
I hope you remain healthy and most importantly happy ❤️
Firstly, congratulations on meeting the surgeon before the op. I never did - due to Covid I was told. Many of your questions can be researched online. The BHF has a number of leaflets and videos that may help you - for example bhf.org.uk/informationsuppo.... I imagine your son is getting a mechanical valve due to his young age as they are expected to last a lot longer than tissue ones. The operations usually last 3-5 hours I believe. Lastly, given the fact that your son needs a new aortic valve, I would think the reason would be to lengthen his life rather than shorten it. Sorry I can't help with what you do during the surgery - maybe a long walk? Good luck to you both.
Thank you for your reply. I know without the surgery he won’t live and it’s needed . I’m hoping with surgery he has a long life span equal to everyone else his age ie live a normal life. We have only had a short time to process all this so a meeting with the surgeon on Tuesday has us in panic mode . . Thank you for the link I will certainly be looking at that . I hope you remain well
HiAs Beatles1956 said, write them down. I found that I had so many questions but didn’t know how to ask them as I didn’t really know what to ask. If that makes sense.
It’s the beginning of the journey for your son and ,as you say, he doesn’t want to know too much. I’d respect his wishes. I’m remembering being a bit like that. Too much about the actual process made me very anxious.
I did it all on my own during lockdown. I asked what I needed to know personally and put my whole trust in the surgeon. I was so impressed by him on that first meeting that I relaxed about the process and only focused on recovery.
Obviously there are choices you can make but a mechanical valve is the usual one for your son’s age. He will feel so much better and it will change his life!
Read what the Hearties ❤️ say on here and go on BHF website.
Thank you . I understand when you say you don’t know what to ask , where do you even begin. ? He’s 34 so he will be going in with his partner we have decided . I think once he meets the surgeon he will hopefully relax and see what he has to say .
When my son was very young we did a lot of research and a pigs valve was the way to go but we have now learnt that the mechanical valves have progressed so well in these last load of years … so we will go with that … I hope you have recovered well ❤️❤️
I had a replacement aortic valve last year. A metal one plus I needed aorta repair too. I guess your son is young? I’m 57. They use metal valves as they last forever. The alternatives last for around 15 years so if you are young a metal one is the obvious choice. Yes he has to take warfarin and that might restrict some physical activities but speaking for myself my readings are good and stable and it has no effect on what I do. I was driving 4 1/2 weeks after the op and was back at work after 8 weeks. Being honest it probably took 6 months to be 100% though. As of now I feel absolutely fine and fitter than I’ve ever been even though I had no symptoms pre op. Definitely he should take advantage of any rehab physio. My wife was obviously worried while I was in theatre but tried to get on with normal stuff. The surgeon rang her direct to tell her I was ok. It was probably about 24 hours after start of op before I was sufficiently awake to speak to her from ICU but she got regular updates. I was 2 or 3 days in ICU but don’t let that worry you, I was walking soon after the op they get you moving as soon as they can. Care was superb. Hope that is some help if you have any specific questions please ask. I didn’t want to know too much pre op and just went with it. I was never in pain just discomfort
Hi Maria, I would suggest that your son discusses the type of valve with the surgeon. That said, as he's already had two procedures when he was younger, it's probably why a Mech valve is preferred. His surgeon will hopefully put him at ease, and I'd go along with @midgeymoo17 re-questions at this point, as I'm a firm believer in not over complicating things in your mind and worrying unduly. It's the approach I've used time after time.
As for yourself, everyone finds a different way to deal with it, first time around, my wife went Christmas shopping with her mum, although to be fair it was less than a week before Xmas.
Actually, I believe she went shopping the other occasions as well, and a had a drink or two. I'm told retail therapy is the way to go.
They suggested we went shopping when he had his last two procedures but we stayed close to him on his ward . They have a quiet room in the hospital where we have learnt we can sit . I could never leave him alone. Going to the pub is tempting tho !,
I’m taking your advice on not to complicate it all as the mind can tend to let us overthink things and stressing isn’t going to help him.
Your son will first have pre op tests, often done as an outpatient. These tests are not painfull and they are routine.
The operation is about 4 hours then straight in to ICU for a day, then HDU for another day. He is then likely to be in hospital for 3 to 5 days
When he comes home he will need someone to care for him, cooking etc, for perhaps six weeks.
The only thing I can think to ask is about which valve to use and that has been decided.
It is a major operation, but the staff are so well trained, it is just a normal day for them. Your lad will be pretty much asleep throughout the two days after op. He might be given a phone to speak with you but he will not recall the conversation.
So I would just ask the surgeon “is there anything we should discuss”.
He will have a good and long life.
This op will not shorten his life, quite the opposite.
I had AVR during the pandemic, eg no visitors. And that was fine. Indeed even preferable. I just needed some rest and to do as the medics suggest.
I said that I didn’t want to know the operation details. Then I could concentrate on the recovery.
He will be fine. Much better than if he doesn’t have the op.
Thank you Colin . That’s very helpful . He doesn’t want to know anything and I don’t blame him. Advise on his recovery is all we need to know . Thank you ❤️
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