Any regrets? : Hi everyone. As some of... - British Heart Fou...

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Any regrets?

Nettyanne profile image
31 Replies

Hi everyone.

As some of you know I am waiting for a date for mitral valve replacement after having a repair in 2007 which has now failed.

Over the last few weeks I have read quite a few posts where people are having problems post surgery such as AF,low blood pressure, pericardial effusion and ticking valves.

I am well aware having been through it once that it is major surgery which will take time to recover from, but my question is whether anyone regrets having the surgery and feels they had a better quality of life before the operation.

Hopefully you are all feeling positive but thought it was a question worth asking.

Best wishes

Annette

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Nettyanne
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31 Replies
DavidSimpson profile image
DavidSimpson

Hi Annette, I had my aortic valve replaced in 2006 at short notice, suffered pericardial effusion, 3 weeks extra in hospital, and have had AF ever since, no regrets because without that surgery I would’nr be here! I now enjoy an active life, I walked 1000 miles last year, including Kinder Scout and High Cup Nick. I’ve had an extra 12 years now and look forward to many more! Good luck with it Annette!

David

Nettyanne profile image
Nettyanne in reply toDavidSimpson

Hi David, thanks for your reply. So good to hear that after your early set -backs you are now enjoying an active lifestyle, we have done lots of walking mainly in the Lake District, we loved going up Coniston Old Man, but that was many years ago.

Best wishes

Annette

Rosie1066 profile image
Rosie1066

AVR nine years ago and absolutely no regrets. I have had nine years of living a normal life, something I had never been able to do since the day I was born. Yes, some post opp problems and still Warfarin problems but I’d certainly do it all again if need be.

Nettyanne profile image
Nettyanne in reply toRosie1066

Hi Rosie,thanks for your reply. Good to hear that you can now live a normal life after your operation. I think my main concern is that before my 1st heart surgery in 2007 the surgeon told me I could only have about 5 yrs to live if I didn't have surgery. At the moment I feel nowhere near as bad as I did then but they want to replace the valve as the leak is severe again.

Best wishes

Rosie1066 profile image
Rosie1066 in reply toNettyanne

My parents were told I would not live to reach my 14th birthday- it came and went and I held out till I was 60 before I had my AVR.

Fredders profile image
Fredders

Hi Annette, I had my second AVR in November, this time with a mechanical valve. Yes I am now on warfarin and have to have regular blood tests and watch what I eat, and ended up with a pacemaker, but I took my surgeon’s advice and had it done again and don’t regret it. I am still suffering with breathlessness, but only outside so suspect the cold has something to do with it and it is slowly improving.

Although I felt okay beforehand my regurgitation wasn’t getting very bad so I figured I’d rather have it done when I did than have to have it done as an emergency.

Wendy

Nettyanne profile image
Nettyanne in reply toFredders

Hi Wendy, I know we have exchanged posts before about 2nd time around surgery, maybe you can understand my feelings as you also felt okay beforehand.

As you say it will be better to have the operation in the near future rather than wait for things to get worse.

Best wishes

Annette

Fredders profile image
Fredders in reply toNettyanne

Hi Annette

I think in some respects it is hard to say go ahead the second time as we know what’s coming, especially if we feel well. My way of looking at it was that my valve had definitely been getting worse, I had echocardiograms every six months, and it wasn’t going to get any better. Also my cardiologist wouldn’t be suggesting having another op if I didn’t need it, especially with the added complication of having had a splenectomy the year before making my high risk of infection. In the end it wasn’t a difficult decision to go ahead with the op and fingers crossed it’s my last - apart from new batteries for my pacemaker! 😜

Best wishes

Wendy

Ethel13 profile image
Ethel13

Hi Annette,

As you know I had a mechanical mitral valve fitted last November when it became apparent during surgery that my mitral valve could not be saved due to a congenital defect. I still have Afib which I had before the op, unfortunately I haven’t been able to have the planned cardioversion to try and correct it as my thyroid has decided to go over active for the first time in twenty years. I haven’t had any problems with the valve and don’t feel or hear it. I had my first lesson self testing my INR today, it means I won’t be tied to going to the Warfarin clinic all the time. Id certainly recommend this if you have a mechanical valve fitted, I had to buy the machine (VAT exempt if on Warfarin for life). It is a postcode lottery as to whether you get the test strips and lancets on the NHS, I am lucky and do.

If you mitral valve is failing and leaking I don’t think you have much choice, it could get worse.

Although early days, I can truly say I have no regrets.

Hope this helps.

Good Luck!

Dory xxx💕

Nettyanne profile image
Nettyanne in reply toEthel13

Hi Dory,

Good to hear from you and glad to hear your recovery is going well after your initial problems. Sorry to hear about your thyroid problem and hope it can be sorted out.

I also self test for my INR levels, as you say it is so much easier than going to the hospital clinic every time. I was fortunate that my local health trust is running a 2 yr scheme where everything is provided for free.

My valve is certainly failing according to all the tests I have had so as you say I probably don't have a lot of choice.

Best wishes

Annette

Ethel13 profile image
Ethel13 in reply toNettyanne

Thank you Annette, pleased to hear that you self test your INR and receive the kit for free. It certainly does give you more freedom.

I hope all is successful with your replacement valve, keep me posted.

Dory x💕

Nettyanne profile image
Nettyanne in reply toEthel13

I will certainly let you know when I get a date, the op should have been done in March but think I've missed that boat by now ! You know all about delays and cancellations don't you.

Are you fit enough to take Boris for his walks yet ?

Take care.

Annette

Ethel13 profile image
Ethel13 in reply toNettyanne

Hi Annette,

I do hope you don’t have to wait too long for your op.

Thank you, I am managing to increase my walking each day but I haven’t been able to walk Boris yet due to either snow or slippery wet ground. I have been sticking to the footpath. Now the weather is changing I am hoping to be able to go across country with Boris, bliss.

Take care,

Dory x❤️

Mary_Janet profile image
Mary_Janet

Good Evening Netty anne,

I had an AVR urgently last May, I basically did not have a choice as I was very ill and would not get better until the valve was removed and replaced. Yes it is major surgery and there have been some bumps along the road but I did not have a choice and I am very glad to be alive. Yes I can hear my heart tick but really only at night as I go off to sleep it's quite reassuring really. I have to take warfarin but it is a small cost. I did not realise quite how seriously ill I was until I read my discharge letter. No regrets and glad to be alive.

Nettyanne profile image
Nettyanne in reply toMary_Janet

Hi Mary Janet, thanks for your reply.

It's good to hear that your AVR was successful, as you say you had no choice as it needed to be done urgently. I take warfarin and I self test my INR levels which is great, much better than travelling to the hospital clinic.

I don't think we realise how ill we are sometimes, because how we feel becomes our normal life.

Best wishes

stevejb1810 profile image
stevejb1810

Triple CABG and never any regrets at all. Beyond scary at the time but didn’t regret it then and sure as hell do not regret it now! I didn’t really appreciate how poor my general health was until a few months post the op. I am now fitter, lighter, more active than I have been in years.

Steve

Nettyanne profile image
Nettyanne in reply tostevejb1810

Hi Steve, good to hear you are feeling so much fitter and more active after your triple CABG.

We get used to feeling a certain way and as you say don't always appreciate how poor our health really is until it improves.

Best wishes

Prada47 profile image
Prada47

Hi Annette

Now that is a difficult question.

I had a CABG in July 2015 and I am going in this Monday 26th to try to open my Proximal LAD further. I think I would say I felt no better in 2015 after the by-pass than I did before. But and as always here comes another But,

But I do have a known defect of 16% of my Myocardium 12% is fixed and 4% is reversible ( which will be fixed on Monday ) the Cardiologist says it is worth the attempt to try. My past by-pass was LIMA to the LAD and Leg Vein Graft to the OM branch of the Circumflex, I do have a CTO in my RCA which is not worth trying to fix Risk v Reward scenario.

So I think they fixed what they could 1st time around and here I am almost 3 years on still being fixed. But ( and here comes another one ) But I would do it all again!! open chest, by-pass machine the lot. Because I don't believe they would have tried to have done it without a reasonable expectation of a good result. I still remember the Cardiologist standing there and his words " Mr W You need a triple by -pass and I will put you to the Surgeon with the Shortest List " that convinced me I needed it doing.

Second time around on Monday it Stents and the Cardiologist reminds me of the TV advert.

Where a car breaks down and the Hill Billy leans out of his window and says " Need some Help " and then when it breaks down again " Need some Help " Then they ride off in to the distance to Las Vegas with it fully fixed.

That's like the Heart Journey for some of us Persevere until it's Fully Fixed, so again I have NO Regrets Low BP, Low HR, weird Heart Beats seems par for the course for some of us, But we are still here talking about it !!!!

Good Luck on your journey Annette sorry it's a long winded answer just trying to paint a picture of why No Regrets.

Regards Frank W

ps My Cardiologist isn't like a Hill Billy and he didn't say " Need some Help " But he did say " I can Help " which was good enough for me .

Nettyanne profile image
Nettyanne in reply toPrada47

Hi Frank, thanks for taking the time to try and paint the picture for me.

I had my 1st heart surgery in 2007 and suppose like most people, I thought that would be the only time I would have to go through that. When I had my latest TOE the cardiologist told me she would refer me to the surgical team and since then I have had lots of tests, I have met the surgeon twice and at our last meeting he said I have a severely leaking valve (again ) and he wants to operate to replace the failed repair with a mechanical valve.

All the best for Monday.

Annette

samurai2565 profile image
samurai2565

We all think that ~ I did I thought I had a better life before the open heart surgery but we are all getting older and life will never be the same as it was before. That's life. But I was told I had about two years before my Mitral valve failed then I would have been dead I guess. So I had the op. it took me a long time to get over it about two years. Do I have regrets? Am not really sure it was better than the alternative. It's a bugger getting old but we all have to endure that part of our life. I went on the internet and learned about other ways of getting better. I have stopped 4 of the pills they put me on and am now only on 5 mg of Amlodipine. Which I hope to get off soon.Heart Operations these days are now commonplace not as serious as they were many years ago.Enjoy any extra life they give you. Life is precious.I am now 71 next month so we all do what we should to survive.

Nettyanne profile image
Nettyanne in reply tosamurai2565

Thanks for your reply.

I was told in 2007 that without surgery I had about 5 yrs to live so I had a mitral valve repair, that repair has failed and I am now waiting for a date to have a mechanical valve.

As you say heart surgery is more commonplace than it was, but the mortality rate and stroke risk will always be higher for patients who have had previous surgery. I have to trust my surgeon when he says the rewards outnumber the risks and as you say enjoy life.

clarehealsworldwide profile image
clarehealsworldwide in reply tosamurai2565

Hallo Samurai. Wishing you a happy birthday for next month. I became 71 two weeks ago....it's a good age, better than the alternative ! All the best. Clare

marypw profile image
marypw

Hi Nettyanne, I don't have any answers for you sadly, but I very much empathise with your concerns and I am following this discussion with interest.

I have a nearly severe leaky mitral valve, but NO symptoms that are definitely cardiac in origin, although I've been told I will need surgery in the relatively near future. My husband has had a very successful CABG, so I'm well informed on the risks and recovery of cardiac surgery. But I'm also concerned about whether I'll actually feel better in the long term, than I do now.

Unfortunately, neither statistics nor anecdotal evidence can predict the results for an individual. Social media sites, related to health, like this one, will be used more heavily by people who encounter problems, so may give a slanted viewpoint. The people who have no problems post-surgery tend to stop using such sites.

I will certainly be having an in-depth discussion with my cardiologist before making any decisions.

Wishing you the very best with your surgery!

Nettyanne profile image
Nettyanne in reply tomarypw

Hi thanks for your reply.

I can understand your concern as to how you would feel after surgery, my problem is that I feel nothing like as ill as I did before my 1st heart surgery, not that I want to!

I am happy to hear that your husbands CABG was successful and wish you all the best whatever you decide to do in the future regarding surgery.

gal4God profile image
gal4God

I’ve had issues since a valve replacement but glad I’ve had it.

Nettyanne profile image
Nettyanne in reply togal4God

Hi thanks for your reply, I am sorry to hear that you have had problems since your valve was replaced but it is encouraging to hear that you are still glad it was done.

Best wishes

MKB38 profile image
MKB38

I had AVR in November. I had hardly any symptoms beforehand, so naturally you think 'do I really need this?'. But the truth is I'm so much better now after 4 months, getting stronger week on week. People say I look so much better than before too, so I've definitely no regrets. Be positive, you'll be fine. Best of luck. Margaret xxx

Nettyanne profile image
Nettyanne in reply toMKB38

Hi Margaret thanks for your reply.

I remember you saying that you had very little in the way of symptoms, so like me you thought "do I really need this ".

It's so good to hear that you feel so much better and that you have no regrets. I am trying my best to be positive but unlike the 1st operation in 2007 I really don't feel that ill, but then again maybe that's the ideal time to have surgery! Talk about "Confused.com".

Best wishes

Annette

MKB38 profile image
MKB38

I really believe that the fitter you are before surgery, helps you recover more quickly. I'm so glad my operation took place before I was actually physically ill.

Best of luck.

Mx

Nettyanne profile image
Nettyanne in reply toMKB38

I agree with you about the fitness and I suppose it is difficult sometimes to know the " right time " to do the surgery, but we have to trust that our surgeons would only put us through the surgery if the rewards outnumbered the risks.

I suppose by now you are enjoying spending time with your grandchildren and hopefully you have been able to return to your singing group.

Take care

Annette

MKB38 profile image
MKB38 in reply toNettyanne

Hi Annette,

Yes I am singing again, gradually building up enough stamina to last the whole two and a quarter hours rehearsals. We haven't looked after the grandchildren yet, though we do see them regularly.

I'm really enjoying the cardiac rehabilitation, and walk about two and a half miles as often as I can.

I have returned to my admin job, just two half days a week so far. I still get tired though, and my blood pressure is a bit high too, so I'm having a 24 hour monitor to check that. My latest ECGs and echo were very good, and everything is working as it should.

I hope you don't have to wait too long.

Love Margaret

xx

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