Hi community,
Any AVR ‘graduates’ able to advise
1: how and why they went for SAVR versus TAVR or keyhole - was this even a discussion- seeing proposed surgeon next week?
2: how and why you were advised to chose which type of valve?
Really wish to know which questions to ask surgeon.
Xx
Hi, both my AVR ops were the full works as TAVR wasn’t an option. My first one I needed the valve and my aorta was distended and in the end they were able to wrap it to bring it back to the right size. My second AVR was for a mechanical valve, following the failure of my tissue valve. If your surgeon says the surgery can be done as a TAVR, the recovery time will be a lot less. Even if you can’t have a TAVR this time, if it needs doing again they may be able to do that one by TAVR.
Another thing you will want to discuss with your surgeon is the type of valve. There is a relatively new Inspiris valve available now which is supposed to last longer than the tissue valves and doesn’t require warfarin. The advantage of a mechanical valve is that it should last your lifetime, but you will have to take warfarin for life and in some people the clicking noise is audible, thankfully I haven’t had a problem with either, my INR levels have been within range since I left hospital and I can only occasionally hear any clicking. My decision to have a mechanical one the second time was mainly down to the fact that I had had a splenectomy and therefore I have a compromised immune system. After discussing it with my surgeon we decided it would be safer to have a mechanical one to hopefully avoid the risk of having to do another op in the future, even if that one could be a TAVR one.
If you have any other queries just shout, lots of us on here who’ve been through the op and come out the other side.
Wendy x
Thanks Wendy. Omg being cut open twice unthinkable. Thanks for reply. Mary x
Hi Wildmeadow,
I had AVR and bypass have a tissue valve I was 68 at the time and my surgeon thought tissue was the best option for me, So went with his advice, it’s nearly 4 years ago so far so good! The sternum mended with no problem, and the scar is still visible but fading.
I wish you well as a Wendy as said any questions there are lots of us here that have been though OHS. It’s a scary place you are looking into but we are here to tell you it’s not as scary as you imagine. Once you have your op you will be on the mended heart road and have your life back, I am grateful every day to the very clever medical team that made it possible.
Stay safe best wishes Pauline
Thanks so much for Reply Pauline,
I am 59, the tissue / inspiras valve very attractive over the mechanical- but def do not want to have to ever face this again!
So glad to hear 4 year update is v good for You.
Very reassuring
Mary x
Hey Wildmeadow. For my AVR (age 50 Dec 2018), TAVR wasn't an option (we did discuss it) as, in my hospital (St Thomas's) at least at the time, it was only used for those deemed too poorly to be unable to cope with OHS. Re valves I'd assumed I'd have no option but to go mechanical at my age but was in fact given the option, and so went tissue - the Edwards Inspiris Resilia, which is a new type of tissue valve from the US coated in an anti-calcificant that, the theory is, means it should last 20-25 years rather than 10-15 for conventional tissue valves. So if you're wrestling with tissue vs mechanical, certainly worth asking about!
My reasoning? Wasn't that keen on the whole Warfarin thing and regular blood tests etc, reckoned let's see how the tech advances in 20-25 years, keen to travel (ha ha right now of course) Warfarin-free for a few years. I've been very happy with my choice so far. I take a low dose aspirin each day plus canesartan for BP and that's it.
There's no 'right' answer here. If you do get a choice it's a very personal decision and by definition you'll make the decision that's right for you. Many who go mechanical manage very well and swear by it and, of course, are set for life, no need to factor in another op at some point.
But hope that helps and good luck! Oh yes two tips if helpful: write down your questions so you don't forget anything and, if you can, bring along a partner to listen as well and be a sounding board on. My surgeon was great, as was St Thomas's, and so I'm sure you'll be in good hands. But the whole build up is a big deal and scary, especially in these times.
But best of luck again
Nic x
Hey Nic25,
Thank you for reply, really really helpful and will write out my questions.
Like you, am concerned about the warfarin and also for me diet issues- have always eaten tons of greens!! So the limits on a lot of greens is a concern.
I know the jury is out the this new bio valve but it sounds good.
Thanks for reassurance again.
Mary x
Hey Mary, happy to help, and if you want any info on the op itself - and in my experience (and I was lucky in that it was straightforward and no complications) it wasn't as bad as the fear of it - very happy to help if I can, either DM me or just ask on here of course.
Good luck with it all again.
Nic x
Really grateful- you are younger than me, but I have been fit even if a bit overweight all my life. Hope it stands to me.
Would love to ask some DM questions nearer the op!
Thanks again. Xx
Hello Wildmeadow - what a lovely user name. I now have a beautiful image in my head.
My husband has his AVR a couple of years ago at age 55. He chose Mechanical rather than tissue because he never, ever, wants to have surgery again. He could hear the valve at first but as he healed and his muscle built back up with exercise the click faded. He can only hear it now if he’s standing facing a hard surface like a mirror and is pretty close to it. I can only hear it if my head is close to his chest. Our young grandchildren can hear it though!
Having Warfarin hasn’t been a problem, except a few months in when his urine turned raspberry coloured. But that was because he hasn’t been put back on an ACE inhibitor after surgery and then no longer on a diuretic so his blood pressure was sky high (above 200/100). It came down when the ACE inhibitor was reintroduced and properly under control when a diuretic was brought back into the mix per NICE guidelines.
When it comes to diet, consistency is key - not in the sense of having the same thing every week, week in and week out but in the sense of keeping an eye on the amount of vitamin K you’re consuming so you don’t binge on it or miss it out completely and so keeping your INR within range.
INR will vary over time but particularly at first as your body settles after the op, the anaesthetic and the medicines you’re on now, those you will have in hospital and new doses/drugs afterwards (like painkillers as well as the Warfarin itself). My husband has his own machine and self-tests, which is very simple.
A pre-surgery tip if I may - practise getting in and out of bed and chairs without using your arms because your chest will be sore so your legs and good core muscles are your friends. And your you may find a shower stool very useful.
The Edwards Inspira Valve isn’t an option where we live.
There’s loads of posts on here about OHS and AVRs which are useful. Feel free to shout out any queries and folk will be along with a reply.
All the best to you and your loved ones.
Really valuable advice Shar28, started practicing on the chair getting up the moment I read that- very important!
Taking it all in. Xxx Mary
I can't answer your question directly, but please happy to share story of success my Mum has enjoyed following mechanical value replacements (twice) over 30 years ago.
If I put my ear to her chest I can hear the ticking, its never bothered her; its actually very reassuring & a reminder of how lucky we are to have had an extra 30 years.
She has had difficulties with maintaining stable INR levels & still does, we test twice a week, she has own machine, but she will tell you its a small price to pay!
I wish you well as I look forward to celebrating my Mum's 83rd birthday next week.
Hi Camaca,
Your reply really buoyed me up.
Feel a lot more confident before I speak to surgeon with all the replies.
So grateful, God bless your Mum! Xx
Mary
You're very welcome Mary, pleased it was helpful!
Hi Wildmeadow ,
I can't contribute much as things have changed a lot in the last few years when it comes to SAVR and TAVR
I had my AVR 5 yrs ago and am so grateful for it (Discovery of the "problem" came very late).
I got the choice over what valve to have and went for a mechanical one (ONX )
Which will last my life time
The secret, as mentioned, is in patient prep!
Be aware how much body movement impinges or directly uses the chest muscles! (I went through two kettles as a result of my ignorance and bad practice)
I remember the journey home and how sensitive I was to bumpy roads and speed bumps - so plan routes well !
Getting in and out of bed was best followed using the techniques used by people probe to falling
Any physio or OT will help with this
The "ticking" noise does reduce once the muscles repair and drugs for BP etc.kickin
It is a bit like a stage whisper in that you hear it louder than anyone else!
I rarely hear it now and when I do then 9 times out if 10 it is a sign that I should be off to bed to sleep!
In my case I had 2 preemptive by-passes
With the artery harvested from my arm
This meant a quicker recovery time and nothing like the leg option
The important bit is that I had physio 6 weeks after my op,once a week, and it lasted for 10 weeks on a rolling basis so you got to see and be with other similar patients
All Ops have their own recovery paths!
The anesthetic I had took 6 months to fully clear out my body
The warfarin took time to settle, but , now is not a problem and self testing is worth it!
Green veg is fine so long as not over done!
So NO Brussel Sprouts eating contests at Christmas time!!
The focus is on getting your life back and the stress free confidence an AVR gives you
Your care team are YOUR team and there is no such thing as a "stupid question"
Ask and you will receive help and great answers
Every patient is different and every patient helps both them and others to come!
So relax and help reduce the stress and BP.
This is a great site as well with a fantastic Heart Community and unlike the polituv jargon we truly are all in this together!
This is an amazing site, I have found such strength from this community of generous people in 48 hours. Thank you again for making time to reply. XxMary
I had my AVR last year at 67 and was advised to take an Inspiris valve rather than mechanical. The Inspiris is supposed to last much longer than previous tissue valves. I asked about a less invasive option and was told that would only be possible if/when the time came to replace it. My cardiologist was also quite definite about it having to be open heart to replace the valve initially so it wasn’t a question for me. I started off being quite anxious about the whole thing but once I’d met my surgeon he gave me much more confidence. Good luck and discuss the size scar he might be able to leave you with. I got lucky and have been left with a minimal scar which I believe you need to discuss and opt for before your surgery. He/she will let you know what’s possible. Good luck. 🙏
Hi TMeditation,
Thank you for replying.
Good tip on the scar size! Am anxious about that so if there are options as you mentioned - glad to be aware!!
How are you getting on with the Inspiris? How does your heart feel a year on?
Mary
Well I never think about it - it’s just there! The valve hasn’t given me any problems at all, it just sits there doing it’s job 🙂 I really thought I’d be aware of having a ‘foreign body’ around but you don’t, no different to having one of your teeth crowned 😄 (I know that’s a strange analogy) but you just forget about it quite quickly. Do you know where you’re having your op? Susan
Op will be Southampton- I am insured but whether it is NHS or with my insurance depends on what happens!
I was insured too and my op was done through the insurance. I can’t imagine they won’t cover you but of course I suppose it depends on your policy. I will keep my fingers crossed for you. I had mine done at the Royal Brompton in London. When you get into these cardiac wards you come across a lot of staff who really know their stuff, it really fills you with confidence. Let me know how you get on. I didn’t discover this forum until a few weeks after my op and I wish I had known about it when I was in hospital. Keep well, you will soon be the other side of this business. Susan x
I will, thanks again, I am covered with the insurance, the problem is that the Spire private hospital in Southampton is currently under NHS requisition so I must wait until they are allowed to proceed with private procedures!
How did you find the Brompton?
Hi,
Meant to add that I found arnica cream really helped with my scars
5 yrs on an my chest scar is barely visible
My arm scar was used for another op in 2018 but is disappearing fast
I know that we are all different, however, worth trying as it is a case of nothing to loose and lots to gain!
Try and build chest and arm muscles up as much as you can
Also keep a diary of your healing progress
I find mine a great help just reading about where I came from to how I am now
Also had bullet points of how I felt etc. Before the op
Truly uplifting in itself!
My therapy was walking to lampposts and back not always a distance thing but time taken as well
Only problem was facing into the wind made walking tough at first.
Also, in Scotland, we get physio classes after 6 week recovery, for 10 weeks
Had friend in London who 6.months after his op was still waiting!
He was hobbling around like he needed a new hip as they had harvested his by-pass from his leg
I did not have that problem
Something you can get your insurance to plan for
Take care and please stay in touch
Alastair
Very latest op date info
Op date
I’ve got my date!!! 2nd AVR
Slow recovery mentally after AVR and Endo (pre op)
