Mitral Valve Deteriorating

[Davewm]

Following my previous posts I wonder if anyone can help me with this.

Over the last 3/4 weeks I've noticed a marked deterioration in my breathing. I had my TEE test on Monday and the consultant said I needed a Mitral Valve Repair as the prolapse had become severe.

This afternoon while out shopping I went and sat in the cafe as my breathing has been getting worse. When I went to find my wife I walked up and down the very large store a couple of times to find her and by the time I found her I'd started to feel dizzy and faint. I sat down and passed out. The first aider from the shop came immediately and as I was struggling for breath she rang 999. Paramedics came and by the time I was able to tell them about my MVP diagnosis they were thinking I'd had an heart attack. They were brilliant and spent about 40 minutes checking me out.

Does anyone have experience of a similar deterioration leading to dizziness and fainting.

Any help greatly appreciated.

Regards

David

[Rosanna75]

Hi David

I was diagnosed with mitral valve prolapse about 3 years ago....I wasn't aware until I collapsed at work. Up until then I didn't know I had it..I only knew I was feeling always so tired and short of breath.

I suffer of athsma so I thought that shortness of breath was due to that and tiredness I associated to the fact that I was working a lot.

But once I collapsed and been taken to hospital I was told I had severe regurgitation on my mitral valve and that I possibly needs a repair.

I then had the surgery after couple of months. My repair wasn't successful as it caused me a mitral valve stenosis.

I also had septicemia and stayed in hospital for 6 weeks.

I just had the valve replaced in Nov 2018 after suffering of severe stenosis.

The advise I am giving to.you is to be careful with the repair as they are not always successful

Mine wasn't and I ended up having two open heart surgery in the time of 3 years.

I know that there are different type of schools on the repair and I would strongly recommend for you to see all the options.

Of course, it is always better to keep your own valve but see what they have to offer.

Where would you have it done?

Tiredness and shortness of breath are getting really bad with the time and plus you will notice a lot of water retention, so I would recommend you to get it sorted asap.

Best wishes

[bantam12]

My husbands mitral leak very suddenly became serious and he ended up in ITU at our local hospital but then transferred to the Heart Institute where he was in ITU hooked up to every machine imaginable, in total he's been in hospital for about 6 weeks, the surgeons have said they can't operate because of calcification making repair or replacement impossible, we are now waiting to see if there are any options at other hospitals.

You need to get treatment asap before you deteriorate further.

[Davewm in reply to bantam12]

I'm really sorry to hear of your husbands problems and I hope and pray that they'll be able to sort something out for him. Thanks for the reply.

Kind regards

David

[bantam12 in reply to Davewm]

Thank you, it's not looking hopeful, all happened so quickily.

Good luck with your treatment.

[13allit]

Hi

Sorry you’ve had that happen. You need to take things slower than previously as this is probably your bodies way of telling you you’re doing too much! I’d book to see your GP as your water retention may have gone up. I had various symptoms while waiting for my valve to be repaired and my Gp was the one who kept me going. Cardiologists are good at diagnosing and getting you referred to a surgeon but I went to my GP loads and they got me stable and as good as possible. They were also very reassuring as they are used to dealing with heart patients.

My valve was pretty useless when I had it repaired and it was 15 months after diagnosis until the operation so pace yourself and be prepared on some days to spend time doing very little and being kind to yourself. Some days towards the end getting up and dressed wore me out so I learnt to not expect much. That way you’ll be much better after the operation and no they don’t always go well but for the majority of people you are back to normal after even if it takes time.

[Davewm]

Thank you so much for your reply. It seems like very sound advice and I will certainly take it on board.

Thanks one again.

Kind regards

David

[Nathan53]

Hello David I will say from start I don't have knowledge of this subject but have you tried a search on this site under 'mitral valve's in this community which will identify all posts on this subject. You could also speak with BHF Nurse by calling 0300 330 3311 - they may be able to talk through options identify Consultants who have particular interests in this area. Hope this helps.

[gal4God]

Wen I get out of breath I go into the w position where ur back is streat and ur legs are in a bent position on the floor or on a seat. It helps wiv circulation. Sorry I can’t spell.

[Davewm in reply to gal4God]

Thanks for the advice.

Kind regards

David