Mitral Valve Regurgatation

[Earlybird7]

I was referred to cardiology in March 2024. I had an echocardiogram which showed I had moderate to severe mitral regurgatation. I was already getting breathless on excertion ,I have since had all the relative tests needed before surgery for repair to valve which could be done keyhole. I was told back in June the waiting list is 12months. My problem now is I am not coping very well ,having strange 'turns' when my legs and feet feel odd and recently my head as well. I have also found myself very emotional and very down .I think the mood and emotion is another sympton of my condition, but I feel like I'm in limbo and don't know if I can stand another 6months of feeling so ill. Has anyone else had similar would be grateful for thoughts

Diane x

[Traveldreams]

sounds very familiar. I would have to sit while waiting for mv surgery as felt the room as spinning, would lose sight sometimes in one eye or both, light headed then as if there was a rush of blood.

Let your cardio team know but it didn’t accelerate treatment for me

Good luck!

[Bluedolphin123 in reply to Traveldreams]

Goodness I use to get those symptoms too and found them to be the scariest part of the waiting, they did increase my medication which helped .

I was told 3 months wait for surgery but it ended up waiting 15 months which could have been even longer except that I ended up in hospital with these ‘funny turns’ which speeded it up a bit but still another 5 months wait from that point.

There are admin errors as I found out so it is best to not let them forget you .

On a positive note 5 weeks post surgery already feeling so much better and life slowly returning to some normality 😊

Glad to hear life is becoming good for you too , enjoy Italy x

[Traveldreams in reply to Bluedolphin123]

Agree, you soon forget how frightening the symptoms were and how long the wait. Like you, told 3-6 months but waited for over a year. Feeling very lucky to be able to travel (whether a temporary or permanent improvement). Glad you are getting on ok.

Your advice to Earlybird7 is spot on. Ensure that you remain in contact with cardiology/ surgical teams.

Xx

[Bluedolphin123 in reply to Traveldreams]

Enjoy the rest of the school holidays before the new term starts again 😊x

[Bluedolphin123]

Hello Diane

I was told 3 months wait for surgery but it ended up waiting 15 months !

There are admin errors as I found out so it is best to not let them forget you .

I had strange turns too and found them to be the scariest thing but they adjusted my medication and they did settle down.

I used that time any way I could to try to stay upbeat and well, I did Talking therapy which did help, every morning I meditated and did journalling, I went for a little walk every day, drank water and ate healthily and these routines gave me a daily routine to focus on which helped.

On a positive note 5 weeks post surgery already feeling so much better and life slowly returning to some normality so there is light at the end of the tunnel 😊

Take care x

[Earlybird7 in reply to Bluedolphin123]

Thank you for replying to me. I feel slightly better knowing other people have experienced these funny turns which are very scary .I have been in touch with cardiology to see if I can see them sooner than my appointment in october. I have been told I won't get surgery untill spring next year 🙄

[Bluedolphin123 in reply to Earlybird7]

Hello Diane

at least you know it’s next spring rather than being told 3 months and it just never happening, the waiting is so hard I know.

If they should say at any point it’s going to be open heart surgery please don’t panic because it’s not nearly as bad as we think it’s going to be and would be absolutely fine ( I was wimpiest person ever so if I can do it you can

Take care and do let us know how you get on x

[Earlybird7 in reply to Bluedolphin123]

Thank you I will let you know and thanks for the words of encouragement 💓

[MummaSoap]

Hi Diane

I’m sorry to hear that you’re not feeling well and can empathise with why you’re feeling so down.

I was wondering whether you could describe your funny turns please?

I have DCM and mitral valve regurgitation (of unknown degree of severity). I sometimes get these strange feelings from nowhere and it’s like I’m suddenly very off balance (mostly occurs when I’m sat down) and I feel very momentarily like I might pass out but I’ve only experienced 1 faint/partial faint in the last 12 months.

I really hope that you can find some comfort in the responses and experiences of others and that you will have a date for surgery agreed very soon. If it’s possible, it may be worth phoning up and saying that you can be available for surgery at short notice in case of a cancellation?

I will keep you in my thoughts.

Best wishes

Soap 🧼

[Earlybird7 in reply to MummaSoap]

Thank you so much. It is helping knowing I'm not alone 💓