AVR Surgery - Advice : Hi All, don't... - British Heart Fou...

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AVR Surgery - Advice

ChrisH84 profile image
16 Replies

Hi All, don't normally post just read what others have put, however need some advice. I'm 36 years old and had a pacemaker implanted in 2018 due to heart block. But now have severe aortic stenosis with severe aortic regurgitation, I need to have AVR with ascending aorta replacement (hopefully not root replacement as well).

I have been to see the surgeon and its been decided that I get a mechanical valve and use warfarin. I have my pre op appointment towards the end of Feb 2021 and might ask them about the other drugs that could take, although I know that they are 20x more expensive than warfarin.

Just wanted to know if people have advice or tips of that they found helped them pre or post op?

Thanks

Chris

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ChrisH84
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16 Replies
Shar28 profile image
Shar28

Hello, I think you’ll find that Warfarin is the only drug licensed for mechanical valves at present, in the UK at least. I don’t know about other parts of the world. And it’s not so bad. Have you looked at the AF Association website? They do some really useful factsheets about Warfarin. Here’s the link

heartrhythmalliance.org/afa...

All the best to you and your loved ones.

ChrisH84 profile image
ChrisH84 in reply toShar28

Thanks very much this, as been really helpful.

Nic25 profile image
Nic25

Hey Chris. First off good luck! It's a very standard, if still big, operation these days so sure you'll be in good hands and on the road to recovery in no time. I had a tissue valve so can't help with anything to do with Warfarin etc. But generally I found practising beforehand standing up from sitting without using your arms was good, as you won't be able to push up for a few weeks after as the sternum heals.

A small towel rolled up and tied at the ends (or just a small cushion) to carry around to hold against your chest if/when you laugh or cough is also good. I also found a small wedge maternity pillow helped give me some support in bed and enabled me gradually to get off sleeping on my back, which I hated. I also had a horseshoe cushion on the sofa for support and which made it easier to get up.

Loose-fitting, comfortable clothing, nothing tight, and things that open down the front are helpful as you won't be able to pull things over your head initially. Exhaustion was a big thing for me for about six weeks, so lots of boxsets helped!

But generally you don't need a lot of stuff I found. I came home (after a week) much more mobile and able than I had anticipated (though no lifting). We'd bought lots of stuff I didn't need in the event. The main thing is just the sternum needing to heal, which just takes time and rest.

Hope that helps but feel free to ask any questions if you have any?!

Cheers Nic x

ChrisH84 profile image
ChrisH84 in reply toNic25

Thanks very much Nic, the practicing of standing up without using my arms and the towel idea will be really helpful .

I have got Netflix, Prime and Disney+ (for the kids apparently), so can get through alot of stuff not watched before while I rest up! .

Stevo1979 profile image
Stevo1979

Hi Chris, AVR at 39 yrs old, mechanical valve, take warfarin. As far as I'm aware and I have asked my cardiologist Warfarin is the only anticoagulant for mechanical valves. To be honest its not an issue for me, once your INR is stable it just like taking another tablet each day. I still lead an active life, exercising 3 or 4 times a week plus walking my active dog!! As for alcohol, I dont really, believe me I really did before my problems and maybe loved a wee tipple too much but don't bother anymore and don't miss it one bit!! Any questions just ask, good luck fir your op and let us know how it went

ChrisH84 profile image
ChrisH84 in reply toStevo1979

Yes, its just warfarin but as the surgical team said to me when I did my pre op assessment, that advances in drugs are happening quickly that soon will have something else.

I must admit my alcohol content has dramatically reduced to the odd occasion since I found out in Nov last year.

Thanks very much and yes will let you know, hopefully all being well its early April.

Harrysgran profile image
Harrysgran

Hi there, i had an AVR 4 years ago with a tissue valve so cant offer any advice about warfarin but i agree that you would benefit from having a v pillow or similar to help you sleep supported on your back and a pillow to hold to your chest if you cough and a bell to summons your carer to see to your every need ! I just wanted to wish you the very best of luck 👍🏻Xxx

ChrisH84 profile image
ChrisH84 in reply toHarrysgran

Thanks very much for that advice, I am getting a v pillow and a cushion to make it more comfortable when sitting around the house.

Sadly, I don't think I will make it past week1 if I called my wife my carer... although she already does too much for me!

😂

Hanibil profile image
Hanibil

HiI had more or less the same operation in 2005 and have been on warfarin ever since with absolutely no issues, you can buy a home monitor to keep an i on your INR it will save you going to the hospital to have it done. As for after your operation you can lead a completely normal life .

ChrisH84 profile image
ChrisH84 in reply toHanibil

Thats great to know and helps put my mind at ease.

Out of interest what home monitor do you use? As I think this would be good to look into.

Many thanks

Hanibil profile image
Hanibil in reply toChrisH84

Glad to be of help coagucheck its only small so great to take away with you, I always take it with me when I go skiing or mountain biking abroad

road2ruin profile image
road2ruin

Hi Chris,I was 49 when I had my AVR, mechanical valve. Initially my INR was a challenge, but stabilised after about 2 months. Now it's not a problem. I use a home monitor and check myself inbetween nurse appointments. I am on 2 monthly checks now as the appointments get further apart the more in range you are.

Good luck with the op. No one is going to pretend it's easy, but the reality, for me, was better than I expected. The hospital really looked after me and provided pretty much everything I needed.

Take ear plugs and an eye mask. Plenty to read and watch as boredom is tough.

Don't be brave, take drugs.

I suffered terrible back ache after too and my wife and sister in law were great at massaging (sister in law is a chiropractor)

Also take some treats. Crisps, sweets, fruit....all in short supply in hospital.

All the best 👍

ChrisH84 profile image
ChrisH84 in reply toroad2ruin

Thanks very much for the advice.

Which INR machines do you use at home, as I want to have this to keep track myself.

I am so far really positive as the surgical team I have met so far been soo supportive and helpful. They have provided a lot of information and support. But they said the same about drugs, that they are there to help recover.

Great idea with the ear plugs and eye mask, plus might take a book that never read Harry Potter to keep the boredom at bay.

Good to know, as I have never had to stay in hospital before.

road2ruin profile image
road2ruin in reply toChrisH84

Hi Chris, I believe there is only one manufacturer of the INR machines and that's Roche. Need to call them on 0808 100 7666. They did it for me at about £280, no VAT. They are available from third party suppliers, but they cost more.

Good luck with whichever way you go.

Peter

Fredders profile image
Fredders

Hi Chris, I had a mechanical valve in 2017 and as has been said already, warfarin is the only anticoagulant used for mechanical valves. Ask your clinic if they support home testing, most do nowadays. Also check with your GP whether they can help with a machine, prescriptions for the lancets and testing strips, it varies from practice to practice and from year to year depending on their individual budget. I have to pay for everything but it is well worth it. I have to go to the clinic every six months to have my machine calibrated against theirs. I am lucky because my inr levels have been within range since I left hospital. You need to be careful of foods that contain vitamin K, as that has the opposite effect to warfarin, green leafy vegetables are particular ones, as is liquorice (one of my favourites but I know I would eat a whole packet so avoid it now). It doesn’t mean you can’t eat them, you just need to be eating the same amount of vitamin k every day to keep your levels in range. You soon get to know what you can eat and drink and what you need to be careful with and there is a lot of info available.

One thing not mentioned in the excellent advice from the others is that after the op you may find your concentration levels and memory are rubbish, this is normal after being under anaesthetic and on heart bypass. Both come back as you start to recover. I took my kindle, puzzle books, MP3 player, phone with me and don’t forget chargers for them. Definitely take the painkillers and ask for extra if you need them, you can reduce your intake as you recover.

Can’t really add anything to what the others have said. I’m sure everything will be fine but if you have any questions ask away, as you can see there are plenty of use who’ve been there. All the best.

Wendy

ChrisH84 profile image
ChrisH84

Hi Wendy,

Thanks very much for giving me lots of good information. Which INR machine do you use at home? I will ask my GP, but they are normally really struggling with anything, so sadly doubt will get anything.

Good to know about vitamin K, as I love my veg, so will have to keep an eye on that.

My memory now is pretty rubbish... So dont know what it will be like after the surgery 🤦‍♂️🤦‍♂️ but good to know, as will just little bits of lots of things.

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