Hi all, I had an ECG on 17th July which showed severe leaking of my Mitral valve. I had an angiogram on the 28th July which showed no blockages in my arteries. I have a meeting with my cardiologist on 15th August. To date my GP or the cardio team have not given me any advice on what I should be doing now. I'm very worried that while I wait for the operation, I'm at a higher risk of having a heart attack, so very anxious and nervous of every heart mumour I feel. So my questions to the community are how long did people have to wait from being diagnosed to surgery? During that time is there any advice to reduce strain on the heart ie do's and dont's, I know some will be obvious like don't run a marathon 😉 but any advice would be great thanks. Cheers Paul
Mitral valve replacement - waiting f... - British Heart Fou...
Mitral valve replacement - waiting for operation, the wait time and the do's and dont's advice please
Hi I don't have mitral valve regurgitation but I do have severe aortic regurgitation and I am still waiting for surgery well for the right time for them to intervene. I have just been told that I will require surgery eventually. In your case you must be having symptoms aswell if they are discussing surgery. Wish you all the best with your appointments. I have been told not to lift weights at the gym but other then that can do pretty much everything! Have you had an echo yet?? Or was it just ecg that picked up the mitral regurgitation??
Hi Yumz, yep had the echo and they said it's a leaking valve and will need replacing. I had a load of questions but the team here said most of them could only be answered by the surgeon, I don't know who that will be yet as heart ops are not done at my hospital. From time to time my anxiety kicks in and even though I don't have severe chest pains, I do feel my heart beats being quite strong and its concerning. I've stopped all exercise and just try to take things very slow and steady. Hope you get a date through soon for your op. All the best, good luck and thanks for replying back. 🙂
Glad you had your echo that helps them get a clearer picture of how leaky the valve is. ok so you will definitely be refered to another hospital to have your surgery did they say when your having yours?? That's good your not experiencing chest pains! Sounds like you might be experiencing palpitations though? Have you mentioned this to your cardiologist? I did and took a while but soon they found I had Ventricular Tachycardia so I'm on verapamil 40mg x2. Sorry to hear you feel you can't exercise I guess it's different for everyone. I asked how much exercise I could do or even if I could do exercise and I was told I can only do cardio workout like exercise bike and treadmill and not to lift weights of any kind, might be worth asking your surgeon or cardiologist. Thanks I really hope I do soon aswell they did say that when I do require surgery to replace the valve then they will sort it out very quickly! Which is something I guess 🙈. I'm having tests done just routine like but still having them I've had me echo still waiting for results back 😅🙃 and on Friday I've got to have holter monitor fitted 😑. Still waiting for appointment for my MRI appointment, which will give them a more clearer picture of how damaged the valve looks as mine is bicuspid aswell as leaky and narrow. Sorry for super long message!
Take care and keep us updated on how appointment with surgeon goes yeah. 😊☺️👍😉
I have a telephone meeting with my cardiologist on 15th August. They should have all my results and I'll ask them about the palpitations, maybe they can give me something like you to help 🤞. Glad that you are still able to exercise and that once they decide on surgery you'll be in quick, less time to think about. Thanks for your advice and keep strong. I wish you all the best and I'll post again when I get more info and you keep us all updated on your progress as well. Good luck. 🙂
Wish you all the best with your telephone appointment on 15th! 😊.yeah good idea, try and get in as many questions as possible, if yours is anything like mine it's only gona last 5 minutes! 🙄😕. Yeah I'm well happy I'm still able to exercise, will be good aswell cause on Saturday I'm going to the gym wearing my holter monitor so they can get a sense of what my heart is like in my daily routine. It's the waiting for tests and surgery that's the worst part 💔. I will let you know when I'm having my surgery and will look forward to your update about how everything goes. Take care and all the best. 😉
Hi try not to worry things will be fine I carried on doing all my usual things I.e working lifting and normal everyday things, I have now had my mitral valve repaired and all was good and then the repair started to leak so back again and 2nd surgery now got a mechanical valve which is doing fine😎recently I’ve been in and had a pacemaker fitted,I have got to the point where I don’t worry about a thing anymore as you are in the best hands possible and they will sort you out when they know it is required.
Thanks for replying 🙂. Sorry you had to go through surgery again but sounds like you are all OK now which is good to hear. All the best and thanks for the advice. Cheers
Good morning....I have had mitral and tricuspid valve repairs....coming up to one year post surgery. My regurgitation was severe but the decision was still to repair and not replace which apparently is my surgeons preferred choice if possible. I was supposed to have urgent surgery but unfortunately I had a nine month wait with three cancellations. However, when I was initially diagnosed and after the first cancellation, i was given medication to help with palpitations and irregular heartbeat caused by the valves. I was told I could do mild exercise...with walking being the best option if I didn't get too breathless. No weights or anything strenuous. The waiting is worrying at times but hopefully your cardiologist will be more helpful with advice and direction on the 15th. Make sure you have a list of questions that you want answering to put your mind at ease. In the meantime if you feel a bit anxious you could always speak to a BHF nurse who are excellent and they could perhaps give you more advice to put your mind at ease. You are also welcome to pm me. I can't obviously give you medical advice.... only personal experience. Hope the appointment on 15th goes well......take care x
Hi there, thanks for your message, this had really helped me, like so many on this forum. Glad you are still OK after 1 year. Agreed, its the waiting that is hard, not knowing when it will happen. I'm hoping the cardiologist will say x has failed but we can fix you, really hoping I hear that🙂. Thanks again for the offer of support.
I'm sure you will be fixed. Even though valve surgery generally involves open heart surgery, you must keep in mind that this is quite a common operation and the surgeons and medical staff are amazing. If you want to know anything else about the op, recovery etc, please do not hesitate to pm me. We are all on here to support each other and sometimes speaking to people who have actually been through the same really helps. All the best x
Hi Paul,
Sorry to hear you are having a stressful time. I had open heart surgery 12 weeks ago, I had severe tricuspid regurgitation and moderate with the mitral valve, had annunoplasty on both and am feeling much better. I had an echo in November last year which showed the tricuspid had gotten much worse and I also had high pulmonary hypertension. It was 15 th May before I had the operation so I know what you’re going through, it’s a worrying time. My cardiologist assured me a wouldn’t have a heart attack, I’m sure if there was any risk of that, they would be rushing you in. Like my surgeon said to me it’s a huge thing to us but an everyday job to them.Leading up to it I just did things I could manage, if I felt tired I rested, I didn’t have much energy so it was a quiet 6 months. I hope you get sorted soon, best wishes Jenny
Hi Jenny, wow you've had a lot to deal with and over a long time but I'm happy you have had the surgery and you are on the mend🙂. Yep, I keep trying to tell myself the same, it's their job every day to do these operations, they are the experts. I hope you continue to get better every day. Thanks for replying. All the best. Paul
I was diagnosed with a leaky mitral valve in March 2019 following a health MOT which revealed I had severe arrhythmia, I’d experienced no symptoms. I was immediately placed on anticoagulants. My valve replacement surgery was in September 2020. After diagnosis my cardiologist advised I avoid isometric exercises. Other than that life carried on as normal; we went on holiday to Italy, I made my usual trips to the UK (we live in Cyprus). Of course because I was on Warfarin I had to have regular blood tests to check my INR. I still take warfarin because of the arrhythmia. I’m older than you but have always tried to stay reasonably fit, but difficult to exercise atm here in Cyprus because of the high temperatures.
Hi there, that must have been a shock to be told that when you had no symptoms, but best it was captured and they have fixed it. Good to hear you are still very active and living life🙂. Yes the heat over there must be bonkers, seeing the pictures from other islands around the med is shocking. Take care of yourself during this time and thanks for the advice 🙂
Hi JDAYT_Waldorf.For now, make sure you write down all your questions before your appointment - as others have said, you may not get very long, but make sure you ask them. You may be able to bounce some around on here.
If you are able to take a cancellation, make sure they know this. I did, and was given 2 weeks notice of going in! May not happen for you, but if you don't tell them you won't get the chance.
You could make sure you are ready to go in, and to come out. I bought a V pillow, useful to prop yourself up with. Elasticated trousers, makes it easier. Wet wipes to freshen up in hospital.
Probably be other things, will keep an eye on for you.👍
Hi Beatles1956, yep good advice. I'm starting to make a list now. Good idea on the cancellations. Ill definitely add that in. I'll get a bag with all the things needed and will include the V pillow and wet wipes🙂. Thanks for replying. Cheers
I waited about five months between being told I needed a mitral valve repair and having the surgery performed. In the meantime I tried to lose weight and went for a walk every day. The walks were fairly short, up to 2.5 miles and with a stick, but because of this my recovery was very straight forward. Good luck and I hope you don’t have to wait too long.
Hi there, glad to hear your recovery was improved with the exercises you did before the op🙂. Hope you are all now OK. Thanks for the message.
Hi
First and foremost good luck with everything.
I had AVR in February and was 3.5 months after being formally placed on the waiting list by the surgeon. I was told it does depend on how high a priority you are. There are 3 categories and I was category 2. I was told 3-5 months so this was in-line with my expectations. This was in Leeds, Yorkshire. I was also warned on multiple occasions that cancellations were common (and if anyone has watched Saving Lives in Leeds you see this happening regularly). Thankfully I didn't have to endure that and all went to schedule and well.
I carried on my usual level of activity on the run up to the operation. For me this was jogging and HIIT workouts but listening to my body all the time. By keeping up your usual activity levels you are better placed to spot any deterioration which is why I was encouraged to do this.
Definitely write all your questions down beforehand. The thing I found the hardest was the lack of ability to plan. I'm a planner and an organiser so not being able to commit to anything (holidays, days out, concerts, sports matches) within that 3-5 month window was very difficult.
Wishing you all the best and feel free to DM if you have questions in the future. 👍
Hi there, glad you didn't have to wait longer than you were told. I'll add that question to my list about the category🙂. Wow, doing all that exercise leading up to the op, impressive. Sounds like you are doing well now. 👍. Yep, I'm the same with planning etc, just need to know the date and work towards it. Thanks again for replying and the offer of DM in the future. All the best.
Hi JDAYT_Waldorf.
Welcome to our world! I had open heart surgery for severe mitral regurgitation coming up to three years ago (age 45 at the time, otherwise fit and healthy). I recall having my angiogram exactly this time (August) and my surgery took place in November. This was during Covid lockdowns and when ICU beds were in short supply, so I was told it would have happened quicker in 'normal' times. I carried on working and tried to maintain regular light exercise; a lower level of intensity than previously, but plenty of regular walking. The fitter you are when you have surgery, the quicker your recovery will be.
As others have said, if you are not on any other prescription meds you are a good candidate to take advantage of a cancellation at short notice. The main thing to prepare for mentally is having your own op cancelled. This happened a couple of times to me and is an emotional rollercoaster. The first time I was prepped and ready to go into the operating theatre, the second I was en route to the hospital. It was a case of third time lucky - got a call to drop everything and go in straight away, op took place the next morning. The waiting is the hardest part - once you're in hospital you're in very safe hands.
Final top tip - get yourself an extra long phone charging lead. You'll be glad of it in hospital.
Good luck with everything 👍
PS: I'm not a doctor, but I was told that the damage done by mitral regurgitation is slow and gradual (and irreversible if left untreated), but it is not the kind of condition that will lead to a sudden heart attack.
I also had that pounding heartbeat sensation before my op. The second I came round from surgery I noticed it had gone, even if I had a few new aches and pains elsewhere!
Hi there, thanks for the answer about the heart attack, good to hear others had the same questions and that they said it should be fine 🙂. Glad to hear your heart pounding sensation stopped after the op, that must have been such a good feeling....apart from the other pain, as you said😀. All the best.
Probably your worry/apprehension is causing palpitations etc. which is natural. If it's severe you shouldn't have to wait too long but in the meantime I don't believe you're at more risk of heart attack. You will be very breathless and tired though. I had a mechanical valve fitted 21 years ago when my leak became severe, but that was after monitoring for many years previously. I also had a major arterial by-pass. Just take it easy but don't stop walking and such like. Try to behave as normal but understand you'll tire easy, which is something you'll have to accept. After surgery do what you're told and you'll feel, after three months or so, very much better.
Good luck with it all and keep us informed!
Hi Mitchum, yep I keep thinking it's the worry and waiting that is causing it. I also think that now I'm aware I have a heart issue, its very noticeable when it starts to beat harder and faster, so I just need to learn to listen to my body more and as you say, take things steady but knowing I'll tire quicker. Thanks for the good luck and I will post again with any updates. Cheers 🙂
Hi I had open heart surgery in October 2020 after repeated infections in different parts of my body for 8 months when they discovered I had endocarditis on my mitral valve I was admitted straight away so unlike you didn’t have time to think just so glad it was found but they have found yours and although it won’t stop you worrying iam sure you can see from the replies you’ve had your in the best hands and they can fix it we all had the same thoughts and fears its now nearly 3 years and all is well good luck with your journey and if you have questions this site is the best place
Hi daveshop, thanks for the message. Glad you are ok after 3 years. All the people on this site have really helped. The waiting is horrible but as you say I'm in the best hands with experts and fingers crossed they tell me on 15th that they can fix me🙂. All the best.
Hi, I've just been through your situation. Breathlessness led to hospital admission last September. Discharged on meds pending op follow up. Further admission November. Had angiogram and trans-oesophogeal echo after several weeks. Cardiologist referred me to surgeon (same hospital unlike you). Saw him late April, had further checks eg lung function. Called for surgery late June and had mitral valve replacement (decided on tissue, not mechanical). Am now 5 weeks post op and doing fine.Advice while waiting was to keep as active as possible (to avoid muscle decline) and to keep as positive an attitude as possible (serious advice from GP). If suffered 10 mins of severe chest pain to call an ambulance. But I think risk of heart attack is not particularly linked to mitral valve regurgitation.
Hope this helps. I can't praise all the medics enough.
Hi Dozival, you have been on a journey and glad you are now on the mend, hope all continues to go well for you🙂. Thanks for your message, I went for a small walk yesterday, on the flat, and I was ok. Felt tired but managed it. Hopefully I can keep this up. Thanks again, all the best with your recovery 👍.
hi. I was diagnosed with severe mitral valve regurgitation in April 21 and had a mitral valve replacement in sept 21. I had occasional palpitations before that but no other symptoms. The best way to prepare is to try and get yourself as fit as possible for surgery like gentle exercising and eating a healthy diet, just do what you are already doing. I asked my cardiologist if I was going to drop down dead and he assured me that it’s not that kind of condition. Like someone said before, it’s a slow burn. I was told I’d probably had mitral valve problems from childhood but had only just started to experience problems age 50. Like you, I had no idea and it was a huge shock. You should also try to see your dentist and get any dental work you need done carried out as soon as possible. The surgeon probably won’t operate unless you’ve had a recent dental check up because of the risk of endocarditis. I’ve had two mitral valve replacements and I am a complete chicken, if I can do it, anyone can. I’m happy to answer any questions you might have.
Thanks Anon, good advice especially on the dental side. It does look like this condition is gradual from other posts who have said the same. There will always be a risk of a heart attack I suppose but its good to hear its more on the lower end. I just need to keep fit, eat well etc. Hope you are all well now. Thanks again. 👍
Hi I was in the same boat I had a chest infection and when the dr listened to my heart she heard a murmur. Have you always had one she asked? No. then I was on the rollercoaster leaking mitral valve, it was 6 months before I finally got the op, after numerous test. While waiting I was told just to carry on as normal. I suppose this depends if you have symptoms, I didn’t and like yourself it was a shock to find out I had a problem. No risks of heart attack. I hope everything goes well for you.
Hi Cat121, thanks so much for your reply. Sounds very much the same with me. Glad you have had the op and hopefully all is good now🙂. Thanks again. Cheers.
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