Mitral valve severe regurgitation

[Antique50]

I have not seen a heart surgeon one year after diagnosis although I have had all the heart tests

[AdamJames157]

How you getting on? Any further update?

[Antique50 in reply to AdamJames157]

Hello Adam - thank you for asking. Had to pay to see surgeon at Liverpool heart hospital. After a lot of questions I was told that unless I paid for the op I would have to wait 8-12 months (because of Covid) . Since then I have had CT scan with contrast but still have no results. Then was unwell for a week with dizziness tiredness and palpitations . Rang GP and told to ring 999 . Ambulance arrived and they took ECG which found arrhythmia. Admitted to hospital but I asked to go home after a night there. Found no one had sent the ECG to my local Consultant so I photocopied them and sent them myself. I see you have an E C G on your website. If you look up what is typed on there it will tell what they found. I think that unless we push everything along ourselves little seems to get done. I am also getting disturbed sleep and my ears are buzzing at the moment. I suppose a mitral valve regurgitation must be similar to yours. Hope you are managing to get treatment. Kind regards and thanks for your concern. Sandra (sorry this is such a long reply.

[AdamJames157 in reply to Antique50]

Nice to hear from you Sandra.

My ECG shows an enlarged heart and severe aortic regurgitation. That was in January. Nothing much has moved since then.

I’m getting hot flushes and some visible back flow. Can feel in stomach and arms and feet.

I’m glad things are moving forward for you a bit, albeit not as quickly as I’m sure we would all hope.

I know the NHS is under significant pressure but I’m 32 and can’t believe I’ve gone from running and cycling last November to this now in under less than a year.

I can walk fine but can’t exercise and getting weird pains everywhere.

Sending best wishes your way!

[Antique50 in reply to AdamJames157]

Hello Adam - are you attending a heart hospital regularly and seeing a Consultant? At 32 you have your whole life ahead of you. I wish I could help. I hang onto the thought that if I was really bad they would get on with it. The nurses at the BHF can help with info and they helped me to find the best surgeon. (Being one of the best however means a long queue). You dont mention any medication. If you get any worse ring 999. It will help to push things along. All the best- Sandra

[AdamJames157]

Many thanks Sandra.

I’m on 10mg of Lisinopril a day which is helping my blood pressure a bit. It’s now in the region of 135-65, whereas before it was way too high.

I complained for years but they didn’t do anything. I was told I had post viral fatigue and given cocodamol as pain relief. This went on for two years and I suffered from horrendous bone pain down my left side and collarbone.

Still not sure what that pain was but still suffer from left flank pain.

The last time I saw my cardiologist was before Christmas. I spoke with him in March after MRI results, however nobody has checked my over since then.

I have been to hospital and had multiple ECGs which show left ventricular hypertrophy but apparently it’s not got worse, despite being severe.

My body is saying different however. I’m not sure if I have had some kind of infection or not which has brought this about but I really don’t know.

I’ve gone over things so many times in my head and feel lost with it all to be honest. I know the NHS are busy but can’t really believe the trouble I’ve had in getting diagnosed . I had to go private to get anywhere in the first place.

Now back in the NHS ( can’t afford private treatment) and still waiting. Sorry for the rant. Just very down and fed up of being so Ill all the time. Thanks for your kind comments.

[Pilgrim2]

Hello Sandra,

I have just joined this forum having been trying to find anywhere with people suffering from this condition (there's not much out there).

How are you doing now --any progress? Are you just waiting for a date for surgery?

I was interested in asking people about their symptoms. I will be honest, im trying to check what I have is "normal" and not I may have some other underlying problem!

Having had a leaking mitral heart valve for around a year, at first it was quite easy to cope with. Heart palpitations, occasional fairly mild chest pains and tiredness if I did anything active (i.e. long walks). As time has gone on it had got worse and I now understand the breathlessness (one flight of stairs and im panting). But also I have hard to describe feelings of overall illness - feint, brain fogged, nauseous generally unwell and of course lack of energy (getting dressed and going downstairs is quite hard work!).

Are these typical sort of feelings you get? Do you find anything that helps?

I appreciate any time you have to reply and also hope you get sorted soon.

Rgds

Mike

[Antique50 in reply to Pilgrim2]

hello Mike- glad you got in touch. I have been going through exactly the same thing. Started off a year ago still able to walk around and even do the garden. I am now spending a lot of time in bed, not able to do any gardening (can’t bend down). I’m very tired often dizzy and breathless and ended up in hospital for 3 days two weeks ago. I’m still waiting for a mitral valve repair. I kept wondering myself if this is my heart or something else! So hope this helps. Best wishes to you. Sandra - worse thing is the brain fog.

[Pilgrim2 in reply to Antique50]

hi Sandra, many thanks for the response. At least its good to hear its all normal, and I guess just something we all live with until the op. I hope you get a date soon.

Mike