Upcoming valve replacement surgery - Any advice?

[InverteBrett]

I've recently learned I need to have Mitral Valve Replacement heart surgery, and am really scared.

I was wondering if there is anybody else in this group who's undergone the procedure who could tell me a bit about the process, recovery and how you felt in the weeks/months after? Can you live a normal life following the surgery?

Also, is it open heart surgery?

[080311]

Hello InverteBrett,

Welcome to the forum, I know where you are standing at the moment is one of the scariest places you have ever been, but please believe me it’s no where near as scary as our imagination makes it.

Your last question first, normally it’s OHS for a replacement valve, there are few reasons when they would opt for the less invasive surgery, age how unwell you are.

You will be in hospital 5-10 days, the first couple in ICU, then a couple of days in HDU and on to the cardiac ward.

It takes 8-10 weeks for your sternum to heal so for that period of time no lifting anything heavier than half a kettle of water no arms above your head no pulling or pushing movements. You have to let the bones heal like any broken bone, we are wired together but you need to be careful.

You will be given breathing exercises to do I called them huffing and puffing keep doing them when you get home. They really do help, when we are on bypass our lungs collapse so we need to get all the little pockets filled up again.

You don’t say how old you are, I was 68 when I had my Aortic valve replaced and bypass I am 5 years on grateful every day to the medical team that gave me my life back. We have Hearties here on the forum 20 years plus and are doing well. As for living a normal life of course up to a point, we have a different life in some ways, medication to take depending on what sort of valve you have, if mechanical then warfarin to take and then blood test to do regularly. But after your surgery your life will be back on track.

Remember you are now a member of the Hearties family and we are here to help you, if you need to talk we are here to listen or to lend a shoulder to lean on.

If you have any questions just post someone will be along to help.

Best wishes Pauline

[InverteBrett in reply to 080311]

Pauline, thank you so much for your message. It's been so scary as you said because my mind has done nothing but speculate about what might come next, but your detail has helped me so much.

Sorry for not stating my age, I'm 31 years old and was diagnosed with my heart condition when I was 11. Are the blood tests something you do at home or have to go to your local doctor for checks?

Thanks so much again, and wonderful to hear you're doing well 5 years on from your procedure.

[080311 in reply to InverteBrett]

Once your levels are stabilised you can do your regular bloods at home though you have to buy the machine. Then be checked at the warfarin clinic every few months.Again it depends on your life style, if you like to take part in sports or you like having a drink, these things need to be thought through.

Remember you will have these conversations with your surgeon, he/she will certainly point you in the right direction.

You are certainly very young to be having to face this but we have members of your age (and younger) that are living normal lives.

I wish you a great recovery when the time comes. Let us know when you get your date and if you need anything answering just post and someone will be along to help.

Best wishes Pauline

[InverteBrett in reply to 080311]

Thanks so much Pauline, taking the time to chat has been such an amazing help to me and my wife, who is equally scared but being my rock. I will definitely keep the group posted.

[080311 in reply to InverteBrett]

It’s really hard for our partners and family when we are going through our heart issues. I am a lot older than you and my husband was amazing, I was in hospital for 7 weeks before my surgery so he had a lot of time to worry! I have 2 sons your age bracket eldest took it in his stride the youngest was a nervous wreck 😂 we are all different. Tell your wife to get a lot of rest when your in hospital she will be your main support and cheerleader when you get home.

Pauline

[Achingheart]

Welcome I’m 4 months post OHS for a replacement mechanical mitral valve. All came as a massive shock as I was diagnosed with severe mitral valve regurgitation from an echo on 2nd June and was kept in hospital from that day through to my surgery in Brompton in 18th June. It’s an awful scary time and of course you will be so anxious. My surgery went really well. Was the most painful surgery I’ve ever had (only being honest) but any cardiac surgeon and their team are amazing. I went back to work after 3 months. I am held together by wires and 5 titanium plates. I am no longer breathless (was on 3 inhalers and 2 nebulisers before due to misdiagnosis of copd) and it’s amazing. I still get tired and don’t always have much energy yet but that will build up. I’m on warfarin for the rest of my life (I’m only 51) and happily tick away. No one told me about the ticking from the mechanical valve lol. It is a long recovery but a good one.

I wish you all the luck in the world and stay in touch with us all x

[InverteBrett in reply to Achingheart]

Oh wow, it all came so suddenly for you, I'm sorry you had to process so much in such a short space of time. I was diagnoses when I was 11, and am now going through the process of requiring surgery at 31. I too was given inhalers early on as they thought I had asthma!

I'm fortunate that I work a desk job, so am hoping to be back doing that relatively soon after the surgery, it's something I'm using to keep me motivated through all of this.

I heard about the ticking, and was wondering: does it sound exactly like a ticking of a clock?

Thanks so much for taking the time to reply, it helps so much and I hope your recovery continues to be a good one x

[Achingheart in reply to InverteBrett]

It was a massive shock and although I am so grateful that I was diagnosed and made better all in a short space of time, I do feel a little cheated as no one knew why my valve was so bad. All other parts of my heart are fab. Take your time with recovery. For the mind as well as the heart. It’s a massive op but you will feel amazing once you’ve healed. The ticking drives me mad. People can hear it if the surrounding area is quiet and medical people pick it up quick lol. They say eventually it does become white noise. I utilise it for when I can’t sleep lol. I count the ticks! Good luck with everything xx

[InverteBrett in reply to Achingheart]

This is what I thought: the ticking will drive me bonkers! Going to feel like Captain Hook whenever there's a clock 😂

[Blackcatsooty]

Dear invertebrate

Please try to edge down your alarm. Replacement valves are very successful.

I had a new aortic valve last year and it is an amazing experience.

You will be told about exercises and it is very important to follow that adice.

I took about 20 weeks to recover, which included a delay due to getting a gout flare.

For the early weeks you need to have someone to look after you. But the wonderful thing is that I could feel a bit better each day. After three months I dug my big garden, drove my car and caught up on paperwork. So yes you can get a full recovery. I am 74 and younger people are likely to recover quicker.

Paulines advice is spot on.

Colin

[Hidden]

Hi InverteBrett

I was called an Old Timer on here yesterday, in jest I would add. The truth is I am just that as I was diagnosed very young with Aortic Stenosis. I was 33 years old when I had my first AVR, but, I'd knew it was coming for years, so I'd say I was prepared. What I wasn't prepared for was how well I would be afterwards, it was a complete life changer for the good. I was suddenly able to do things that the vast majority of people take for granted. Taking the option of a Tissue Valve, no meds and I was able to lead a normal life.

Same as yourself, I worked in an office, and was back at work after 8 weeks or so. We moved house 13 weeks after the surgery, and I was able to play a full part in renovation works.

The valve lasted 19 years, before it needed replacing.

I m now fitted with Mech AV/MVs. Warfarin doesn't bother me, I haven't changed my life a great deal to cater for it. As for the ticking noise, it's not a problem for me in the slightest.

The best advice I can give, particularly at your age, is to accept and embrace your situation, get the op over and done with and get on with life, no looking back. It will make a difference.

Best wishes

Heed

[InverteBrett in reply to Hidden]

Thanks so much Heed, one thing that's been scaring me is my age in relation to the surgery, and if it basically cuts my life expectancy in two. I've actually started to think positively and wonder if I could live a better life after the surgery, now that my heart functions as it should.

I'm thinking of doing the same: pig valve first to avoid the blood thinners, then replace for mechanical if/when it fades. Again, all depends on my chats with the team and the surgeons.

Thanks so much, I had a bit of a breakdown last night and this message helped lift me out of it x

[Hidden in reply to InverteBrett]

I can only go off my own expereince, and everything about the surgery was positive, but, I dare say, that vast majority of us who have surgery relatively young, recover very well and just get on with life in an improved condition. No looking back.

Meeting the surgeon is a biggie, mine put me at ease, and any anxieties I may have had, just went out the window. The type of valve you choose is very important. From what I've read on here, the new gen of Tissue valves last for 20+ years and who's to say what they'll be doing by then - ask the surgeon for all options. I've no regrets the way I went.

I'm now 60, so they must be doing something right🤣

[WeaverShaz]

Welcome InverteBrett. Yes, the thought of the surgery is very scary. However, I had an aortic valve replacement 6 weeks ago and have surprised myself at how well I am doing now. I managed at home on my own from being discharged. Yes, the first week is challenging, although I wouldn't call it painful - they have all the good drugs in hospital. I found the worst part of it all was having the drains removed but even that was quick. I have a tissue valve so don't have to worry about warfarin, but I gather that is much easier to manage nowadays. Good luck.

[theshelbycorp]

I'm new to this too but wanted to add these comments are really helpful for us "newbies". I did post something similar, mine is AVR however, I'm not sure how different that is