Heart Valve replacement

[HenryHerbert24]

Hi, I am waiting for a heart valve replacement and would like to chat to someone who has been through it?

[080311]

Hello HenryHerbert24

Welcome to the forum, I have had my Aortic valve replaced and a bypass. This was 4 years ago at the age of 68.

I know the place you are looking into is scary but let me tell you it’s not as scary as our imagination makes out.

If you say what you want to know, as regarding the surgery or recovery, post and someone will be along to help.

We are here to help you through this, have you got a date? Let us know Take care.

Pauline

[HenryHerbert24 in reply to 080311]

Hi Pauline,

Thank you for replying.

I am on the moderate to severe scale so tried putting the operation off as long as I could, but I have just started having symptoms so struggling with my breathing and feel at times someone is sitting on my chest. I am 44 years old and overweight but I do exercise, just have a crappy diet.

I have so many things going through my head. I am worried about the operation and the scars (vain I know), the best valve to go for (mechanical or tissue), being off work for 6-8 weeks (my employer pays only statutory sick pay so finances will be affected).

This was something that was in the future, so put it out of my mind and now it seems more of a reality. I think I am just scared in all honesty

Tammy

[080311 in reply to HenryHerbert24]

Hi,

Well first things first start with your diet, here on the forum lots of us follow the Mediterranean diet it’s recommended by BHF and it’s not a bad way to start losing weight and eating well. The scar, mine as all but faded now, but at first I looked at it as my badge of honour! This is something that as happened to me but it’s saved my life. Which valve to go for I have a tissue valve, went with what my surgeon recommended. You are a great deal younger than me so maybe a mechanical one, but that involves you taking warfarin for life. So that depends on you life style. You need to talk to your surgeon and get their input. There is a new valve out which you might find better.

Recovery don’t know what work you do, but for the first 8-10 weeks no lifting anything heavier than half a kettle of water no pulling or pushing movements it was great no house work or ironing for me😂 and no arms above your head. Remember your sternum needs to heal and even though we have been wired up the bone like any broken bone needs to heal. When you get home it’s baby steps, when your body says I am tired you rest, gentle walking every day building up your stamina. The other thing let your brain catch up to what as happened to your body, it sort of says what on earth as happened here😂 so don’t be surprised if you are a bit emotional. One more thing in hospital you will be given breathing exercises to do I called them huffing and puffing! Carry on doing them when you get home. Your lungs take a hit when your on bypass I found it really helpful.

As I said it’s 4 years since I had my op, and every day I am grateful to the clever medical team that gave me my life back. Remember your life will be good again with a mended heart, you will be travelling on this mended heart road that we are travelling on.

Best wishes Pauline

[HenryHerbert24 in reply to 080311]

Thank you for being so honest and knowing what is coming up has made me feel better. I guess it is the unknown. I live on my own so not sure whether I will have to stay with family for a bit or ask my partner to stay here but he works full time too. It will be a battle scar which I will happily have if it means me being here longer.

Tammy

[080311 in reply to HenryHerbert24]

Those first couple of weeks after surgery can be difficult trying to put the very glamorous white stockings on is quite hard though they do show you a trick with a plastic carrier bag in hospital 😂 So having someone is great but if your alone you could manage, my first few walks I felt I needed someone next to me just for a bit of reassurance.

I love the way you say battle scar for that is what it is.

Pauline

[HenryHerbert24 in reply to 080311]

Oh can't wait to find out the plastic bag trick! Thank you for easing my worries

[sim21 in reply to 080311]

Hi,

You seem like a very positive person (which is so great and hopeful to see) Can you give any advice for getting reading for an operation, I know someone who is very worried about their operation, and I know that its important to be calm as possible in these situations, can you pls give tips in how you dealt with your pre and post-operation process? I would appreciate it

[080311 in reply to sim21]

Morning sim21,

First thing to say is that the surgery is no way as bad as our imagination makes it. The waiting is definitely the worse part. My situation was a bit different than maybe some others, I was in hospital for 7 weeks before my op, I was quite sick. They transferred me to the specialist heart hospital where I had my surgery I was only there for 7 days so you can tell how quickly the op made a huge difference to my health.

Listen to all the instructions you are given and follow them, no arms above your head no lifting anything heavier than half a kettle of water no pulling or pushing movements you have to let your sternum heal like any broken bone 8-10 weeks.

They will be given breathing exercises to do by the physios I called them huffing and puffing, carry on doing them when they get home, it makes a big difference, remember your lungs are collapsed when we are bypass so they need a little help filling out all the little pockets.

Don’t be surprised if they get emotional, it’s normal the brain is still processing what as happened to us. Listen to your body if it says I am tired you rest. It’s baby steps, but they will get there.

I am 4 years down the road and grateful every day to the medical team that gave me my life back. Remember they do this as their day job.

If there is any questions as to ICU or care of scar or anything else that would help them just post and someone will be along to help.

Best wishes Pauline

[sim21 in reply to 080311]

Thank you for your reply, I feel that we have not been given enough information (due to covid, conversations have been over the phone) but we trying to support him as much as possible

[HenryHerbert24 in reply to sim21]

HiTotally agree with Pauline. The lovely people on here helped me so much, I will be forever grateful. Easier said than done but the imagination is definitely worse than the reality. You just have to realise your body goes through a lot during the operation and you need to rest, look after yourself and listen to doctors

Tammy

[Templar889]

Hi HenryHerbert. I know what your going through. I’m 56 with severe stenosis and am now going through pre op tests. All tests good so far so hopefully just a new valve.

The choice of valve is the main thing I’m struggling with. It’s a personal choice and I really don’t want to get it wrong. Like yourself I was expecting this in another 10-15 years!! Lol.

[HenryHerbert24 in reply to Templar889]

Hi,

I haven't met my surgeon just had telephone consults so part of me just wants to trust the experts and say you decide. Its hard isnt it? How are you feeling?

[Templar889 in reply to HenryHerbert24]

Nervous I suppose. I’m more concerned with choice if valve to be honest. I think I’ll go for a biological one for lifestyle and hope I get 10-15 years out of it.

No warfarin or clicking noise. The Resilia biological valve is rated up to 30yrs so hopefully can get that one.

My surgeon wouldn’t make the choice. He said it’s up to me.

[HenryHerbert24 in reply to Templar889]

Would that be less invasive surgery?

[Samgeorge in reply to HenryHerbert24]

Hi there and welcome to the forum. I had my aortic valve replaced with an Edwards Inspiris Resilia tissue valve at the beginning of the year. You can have it through less invasive surgery but my surgeon recommended open heart surgery. I’m 53 and 4 months down the line I feel pretty much fully recovered. The thought of the op was far worse than the op itself. I had very little pain,more what I would describe as discomfort and feeling weak. If you can have someone with you for the first couple of weeks it will make life sooooo much easier for you. Don’t forget you may need some emotional support as well !!! Listen to the restrictions for lifting etc. and follow them. List to your body as well. You’ll know when you’ve done too much.

Hope it all goes well

Sam

[Samgeorge in reply to HenryHerbert24]

Sorry not sure why this came up as a new post for me. I guess you may have already had the op 😁

[Nic25]

Hey Tammy. I see you've already had some great advice on here but just to say I had an AVR in Dec 2018 age 50. Very happy to discuss my experiences with you or to try and answer any questions you may have? Feel free to DM me if you like? I went tissue, the Inspiris Resilia, but it is a very personal choice with genuine pros and cons to each. The mental side is also immense - the terror basically - so very happy to try and offer any reassurance I can (as in my case at least the reality was not as bad as the fear, and the outcome definitely better). But happy to help if I can. And good luck; appreciate you are likely to be in an anxious place at the moment.

Nic x

[HenryHerbert24 in reply to Nic25]

Thanks Nic. Is this the surgery which is less invasive using Inspiris Resilia? I just need to know my options i think as i know very little apart from pros and cons of tissue and mechanical but not really the different types.

I suffer with anxiety and depression, so have ome to conclusion that its happening so the more I know the better I will feel about it as am prepared.

[Nic25 in reply to HenryHerbert24]

Hey Tammy. No you're thinking - I'd imagine - of the TAVI procedure, which is basically an alternative to open-heart surgery, done keyhole through the groin. Mick Jagger had it, but for the rest of us who aren't millionaire rockstars (or at least this was the case in 2018 and things may now be different) on the NHS it was generally only offered to those deemed likely to be physically unable to handle OHS. Obviously a conversation to have with your surgeon or cardiologist, especially if it is an option, but just to highlight it may or may not be.

The Edwards Inspiris Resilia is a new type of tissue valve that has been coated with an anti-calcificant which means it will/should calcify (stiffen) more slowly and therefore last longer before needing to be replaced. Conventional tissue valves have a life of approx 10-15 years but the Resilia is supposed to last 20-25. Of course, that's only data on this at this point as no one has had one that long! But it was a gamble I was happy to take.

For me, my thinking was get 10-15 years (hopefully more) Warfarin-free and see how the technology improves plus while with a mechanical valve, yes, you 'should' never need another operation there is of course no absolute guarantee that will be the case.

Basically, if it helps, with mechanical the pros and cons are. Pros: one op and you're done (hopefully). Cons: you'll need to take Warfarin for the rest of your life to prevent clots forming on the valve. That will need regular blood checks (though there are now home machines that can do it), a risk of bleeds and stroke, and an adjustment to your diet (vitamin k can be an issue for eg). Some people also find the ticking sound an annoyance (though others find it reassuring).

Tissue. Cons: you accept it'll need to be replaced at some point, so more than one op. Pros: no Warfarin (I just take low-dose dispersible aspirin daily), no diet changes or risk of bleeding, no ticking.

So there are pros and cons to each. I'm obviously biased towards tissue but those who go mechanical swear by it too. The main thing, whatever you decide, is to embrace and accept the choice you make as having been the right one for you and don't do 'what ifs' whatever happens, as that will tear you up. I also tried to recognise that we are lucky to live in a time not only where there is an operation to fix this, but it is nowadays considered by surgical teams to be a very straightforward procedure (if still of course a big operation) and on top of that we get to pick and choose stuff!

I won't go on here about the actual op itself (this is already quite long enough) but I can send you some pdfs from my hospital (St Thomas's) that I found helpful. I was in and out in a week (though had no complications so it was straightforward) and, while sore and tired, came home much less of an invalid than I had feared and within weeks was doing 40 min brisk walks each day. Plus the improvement I felt in heart function was staggering (especially as I hadn't felt I had had any symptoms beforehand). So I am very glad I did though at the time I was in a funk of terror.

So I hope that helps a bit for now and offers some reassurance. But very happy to try and answer all and any other questions you have!

Cheers Nic x

[Templar889]

As far as I am aware the less invasive surgery is only an option if you are not well enough to go through open heart.

No other type of surgery has been mentioned to me.

[HenryHerbert24 in reply to Templar889]

Ah right I understand now. The tissue resilia seems a good option if it lasts that long

[Jay777]

As I understand it TAVI is through the groin and used for individuals whose heart is not strong enough for full surgery.

The standard approach (SAVR) is around 5 days in hospital plus 8-10 weeks for sternum to heal but if you have an office job you could possibly return to work earlier.

The minimally invasive option (is it called TAVR?) means shorter hospital stay and recovery however my surgeon told me that “not everyone’s anatomy is suitable” and so I went with the standard option, thinking I would trade the recovery time for making the surgeon’s job as easy as possible and thus hopefully avoiding any complications, such as valve not seating correctly. I had the Resilia valve.

I tried to find an image of the different scar length for you - urmc.rochester.edu/heart/tr...

[road2ruin]

Hi Henry,

Some great replies already, but just to add my two pence, more for reassurance, the fear is definitely worse than the actual process. In fact, while I was in hospital in Bristol I felt ok, safe, looked after and apart from the lack of sleep and being very tired all the time, I just wanted to go home.

I was in for seven days and opted for the mechanical valve (49 years old at the time), so if you want any info about that please ask.

A few of us have written a diary on here of our events over time. Robinangel and myself are two that come to mind. You can access them from our profiles. Do have a look, it will help.

Remember you are not alone...

Regards

R2R

[HenryHerbert24 in reply to road2ruin]

Aw thank you. I will look at those. I am normally a total ostrich and dont want to know, but this time I am trying to weigh up all options and find out as much as I can.

[Thanksnhs]

Hi I had a transplant the end of July, I also stay alone, I was discharged after three weeks, the physio's made sure I could walk up and down the stairs safely and the occupational people gave me a seat for my shower, as I couldn't do housework my son popped over and done the basics for a few weeks, I got my shopping delivered, it all worked out fine, I was glad of that as I didn't want to stay with anyone or have anyone stay with me, not being able to drive was the worst, my brother had to take me to clinic every week, but 12 weeks later back on the road, can do all my housework and shopping 👍I am sure all will be well and the hospital will help with any fears you have or practical things you need, even when home they are at the end of the phone to help, take care and keep us posted how it goes char

[HenryHerbert24 in reply to Thanksnhs]

Thank you. Nice to hear from someone who lives on their own too. I live in a flat so its not too bad. The indendance of not being able to drive for a while will be frustrating

[Thanksnhs in reply to HenryHerbert24]

That was the worst for me, but the thought of anything happening to my chest wound stopped me thinking about it too much, I was so glad when the hospital said it was fine, I had to do without it for seven months when my defibrillator fired last year my car has been more off the road than on! take care and keep us posted I am sure it will go well, char

[Nic25]

Hi Tammy, hope all's OK. Just further to my reply of yesterday (and not wanting to overload you with info or terrify the living daylights out of you of course) here are the pdfs I mentioned. They're pre-Covid and so things may have changed a bit, but I found them useful. But good luck with everything again. Cheers Nic x

guysandstthomas.nhs.uk/reso...

guysandstthomas.nhs.uk/reso...

[HenryHerbert24 in reply to Nic25]

Thanks nic

[Templar889]

As everyone on this site will tell you it’s a personal choice. But if I can have 15yrs with no restrictions that seems a good choice for me. May or nay not need a re-op depending on developments.

[Apneale]

My 25 year old son just had AVR. He went with the mechanical valve called a ONX valve he’s doing very well.

[Templar889 in reply to Apneale]

Great. Apparently they require a lot less warfarin than other mechanical valves?

[Apneale in reply to Templar889]

That’s right Templar seems to be a great valve both my sons where born with AS my youngest son is 20 he’s being monitored his AS is mild at the moment. I wish you well.

[Templar889 in reply to Apneale]

Do they have any issues regarding g valve noise?

[Templar889 in reply to Apneale]

Any info you can provide would be much appreciated. Jon.

[Apneale in reply to Templar889]

Only one son as had AVR so far 2weeks ago this Thursday went to the hospital today with him to check is INR. Regarding the noise he said the first few days after the op he could hear it a little ! But now not so.

[Templar889 in reply to Apneale]

Would be interesting to know how much a reduction in warfarin he will be taking when it settles down. At my age I am in the middle zone for either valve so whichever one I choose should be a fair choice. The more I read the more difficult the choice becomes !😂

[Apneale in reply to Templar889]

Sure he said 1.5- to 2.0. Because he’s only 25 the OnX valve was recommend by his surgeon Professor Aung Ye Oo. At Barts in London he was a private patient.

[Templar889 in reply to Apneale]

I’ve read quite a lot about the on x valve. Given age I’m leaning towards a Resilia with potentially 15-20years lifespan, possibility of VIV replacement with no restrictions on lifestyle. The noise issue is a big one for me as I struggle sleeping with any noise. Some people say they don’t hear it while some do 🥴

[Apneale in reply to Templar889]

My son said he’s sleeping well with no issue with noise ‘ I’m so happy he’s on the mend take care all the best to you.

[Templar889 in reply to Apneale]

Give him my best.

[Apneale in reply to Templar889]

Thx mate.

[HenryHerbert24]

Well I've had a call and my operation is Saturday 31st October so next week... oh god

[080311 in reply to HenryHerbert24]

That’s great news, you have to look on it as this is going to give you a mended heart, and you will have your life back on track. I know it’s scary, it is for all of us but here I am mended heart and saying it’s nowhere as awful as we imagine. Remember they do this as their day job and are very good at what they do.

I send you best wishes Pauline

[Nic25 in reply to HenryHerbert24]

Wow. Good luck!

[Zindolo in reply to HenryHerbert24]

I had my AVR on November 3rd, which was Election Day here in the USA. I was hoping to come thru it with a new heart valve AND a new president elect, and it worked! Anyhow, since we both had it done during the same week, I was just wondering how you feel you are progressing. After the operation they told me I could only drink 1.5 liters of water per DAY because I was retaining too much fluid, but I never seriously tried to follow that; I drink more milk alone in one day than that! So I've been worried that maybe my healing process would be damaged, but as far as I can tell it hasn't been. I have completely lost my taste for booze and improved my diet considerably tho, lost about 10 pounds so far without even really trying. I don't walk 30 minutes every day like they said I should, but more like 3 times a week. I'm up and about in my apartment tho. Oh, and I don't follow the weight limit either when it comes to lifting. Anyhow, I just noticed that we both had our operations about the same time so I just wanted to compare notes, if you get this message. I have been to 2 physical therapy sessions but those are just another way for the hospital to rake in the money, as far as I can tell. In both, I spent 12 minutes on a treadmill followed by 12 minutes on an exercise bike while wearing a heart monitor. My health insurance has an $8,000 deductible, which I am way over, but I will have to start paying out-of-pocket if I continue past December 31st. The nurse told me that would be about $500 per SESSION!!!!! RU kidding ME???? The overall cost of my AVR, including the tests and all that, was roughly half a million dollars! I only bought the insurance in case I got in a bad car crash and had no idea I was going to need the AVR.

[Jay777]

All the best. You are in good company Arnie Schwarzengger had his done this week

[080311]

As Jay777 says Arnie Schwarzenegger had his Aortic valve done this week, saw a photo of him looking maybe next day he was looking good, still attached to drips. This is second open heart surgery, he had congenital heart problem fixed back in the late 90’s.

[Hidden]

Hi Henry. Sorry for coming late to the party (only joined the site today) but wondered how you got on? I’ve had 4 open hearts now (I’m 52) and having my 5th hopefully, in a few weeks. Happy to chat about anything you need to as a bit of a seasoned valve replacement person now!