Mitral Valve Hassles: This is my first... - British Heart Fou...

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Mitral Valve Hassles

Paul101
Paul101

This is my first post. I was diagnosed Mitral Valve Prolapse with Severe Regurgitation three months ago. Ace help from cardiologists but advice about how to live is kinda "do as much as you can but stop if you feel breathless". OK but what is breathless? I used to have asthma when a child and I really know what that kind of breathless is. This kind is strange - if I do too much it sometimes strikes after even up to an hour or two, and it feels like something squeezing my lungs up the centre of my chest. (Really hard to find the right words for this.) I also end up with something I think is irregular heart beats.

So here's the first question - is this what other people feel?

The second questions stems from the advice to keep on doing stuff to stay fit. What exercises can be done without damaging the Mitral/Aortic valves?? I know to avoid stuff that stresses the heart suddenly but what can you actually do? e.g. Does the yoga move called "the bridge" cause any problems? Does walking without generating breathlessness cause any problems? Does carrying shopping cause problems?

Your experiences will be most welcome to me.

Paul

10 Replies
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Hi Paul

I was diagnosed with exactly the same in February 2017. Its hard to say what you can do as each of us reacts differently to the valve not working properly. Basically I found that my body stopped me if I was doing too much and it wasn't always immediately. When I was tired I had to rest and learnt to take things as I could each day. You may find that in damp weather you'll feel more tightness across your chest and you'll get to learn what being breathless with this heart condition feels like.

I had times when I had palpitations and that's not unusual and when that happens take it slowly and it'll soon pass. I continued doing yoga until about a month before I had the valve repaired and could do most of the positions but maybe not for as long. I did fond that I couldn't bend forward and have my head lower than my heart for very long as my condition worsened.

I kept going tot he gym and took things carefully, not weights but did things to slightly raise my heart rate and keep moving.

If things felt worse I went to see my GP and he would check me out and I was on fairly high doses of water tablets later on. These really helped to keep the fluid from collecting in my lungs and ankles. It also doesn't harm to have them involved from the beginning as they are the ones who will maintain you as you go through any tests.

I ended up having my mitral valve repaired in May and can;t believe the difference it had made to me.

Hope everything goes well for you and do get in touch if you have any more questions you think I can help with.

Paul101
Paul101
in reply to 13allit

Hi 13allit - many thanks for your comments. Most telling, the head below the heart - yes, problems doing up shoelaces amongst others. As to yoga, very helpful... I have been doing less than usual but you give me reason to think that I can continue. The point about water tablets... maybe I should see if the doctor would recommend upping the already quite high amount sometime - but maybe not just yet.

I am waiting for an op - don't know when it is yet. Don't yet know the extent of the op. It could involve some work on the Aortic Valve too ... won't know until I have had a CT scan.

Glad to see things got better. Did it take long after the op before you were up and walking about. ? I guess this depends somewhat on the exact procedure you had. How was your recovery - any thoughts that might help will be much appreciated.

13allit
13allit
in reply to Paul101

Hi

You definitely need to keep doing what you can and accept that you’ll be able to do less some days. The main thing is to keep your heart muscle as healthy as you can. Before my op I wasn’t able to do much and walking up any incline was difficult so I made sure I found places to walk on the flat even if it was inside it was exercise. Post op I was home on day 6 which I have to say was scary. Stairs were difficult and I did them two at a time with a break! I immediately lost all the breathlessness caused by the valve not working but you will be debilitated by the operation. The main thing is to let your bone heal. Trying to do too much too quickly can cause you problems later. Just take it steady and a week or two extra being careful will be worth it.

I had complications as I developed pneumonia and also had something called Dressler syndrome develop where my immune system reacted to the operation and I got lots of inflammation. I ended up back in hospital for nearly three weeks. When I came home though I was very mobile and healing well. In some ways resting more than I would have done at home did have some benefits! My community cardi nurse was really good and very reassuring. She told me to be kind to myself and not beat myself up when I had bad days. Very wise words. My op was in May and she told me it’d be at least Christmas before I felt I was doing well. Again wise words as that’s exactly what happened.

I wasn’t prepared for how it all affected me psychologically. Some days I felt really low and as though I’d never get well. This apparently isn’t unusual as your body and brain work out that you’ve had such major surgery. Again support from the cardio nurse helped here.

Hope you get things moving quickly and you can move on with your life again.

Take care.

Paul101
Paul101
in reply to 13allit

Thanks very much for sharing - I am getting a picture of how things might be and I see that it takes determination both before and after to keep on going. Your cardi nurse sounds wonderful. Again, thanks.

Hi Paul,

At the age of 40 I was diagnosed with your same problem and I do have atsma as well so I understand where you are coming from. The two things can get easely confused but I noticed increasing together with shortness of breath was my tiredness.

A sense of exhaustion for every little thing... this together with shortness of breath made my life difficult. Given my relatively young age, I was referred to a card I thoracic surgeon straightaway.

He reccomended a repair of the valve, rather than a replacement. Three years later they discovered that the ring that was used for the repair was too tight and this caused me a stenosis of the mitral valve. To cut the story short I have now undergone to another open heart surgery to replace the valve.

I am still recovering from it.

All I can say to you , from my personal experience is, until you are really symptomatic with very strong shortness of breath and feeling extremely tired, try to live your life normally and do exercice you heart. Keep fit and eat well, this will definitely help.

Listen to your body and it will tell you if you overdo it.

Keep checking your heart regularly with stress eco and TOE as these will tell your doctor if your regurgitation is bad enough to go ahead with surgery and mainly if the heart is still ok.

Don't replace your valve just yet, if you can live like this without damaging your heart, do it.

Best wishes to you

Rosanna

Rosanna75
Rosanna75
in reply to Rosanna75

Sorry, I forgot to mention, I was doing yoga regularly until I stopped because certain positions were making me feel uncomfortable and light headed

Until less than a year ago I was doing spin classes at the gym, but at some point I had to stop because I was finding it too hard.

That's why I was saying, listen to your body as it will tell you.

If you haven't done spin classes before I wouldn't reccomend you to start now, but continue the excercises you are currently doing.

Yoga is brilliant for relaxing your mind too, so keep doing it if your body allow you

Let me know if I could help you any further

Lucy_Hall
Lucy_Hall
in reply to Rosanna75

I’m awaiting an ‘urgent” aortic valve replacement, expected minunun 4 month wait. I was lying awake during the night thinking about the very same question so look forward to reading the replies.

Rosanna75
Rosanna75
in reply to Lucy_Hall

Hi Lucy

I wish you all the best with your surgery. Stay positive if you need to ask any questions regarding the surgery and the recovery I am happy to help.

In regards to the excercises try to do what your body allows you but don't run the marathon if you never run one 😉

Best wishes

Rosanna

Paul101
Paul101
in reply to Rosanna75

Dear Rosanna75

Thank you for your posts. You also encourage me to keep going with Yoga. The tough trick I guess is knowing what damages the heart and what helps it through exercise. As you write, "listen to your body". I wish you a good recovery.

My husband has been in ITU for 3 weeks with severe mitral regurgitation and waiting for surgery, how is everyone managing to carry on living it as my husband is clinging on to life.

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