Four years of suffering ( in bio) just told valve leak top of heart. Most people no treatment req. Anyone else have advice? My bio explains

[Worried422]

Leaking heart valve bad symptoms doctors won't do anything

[peterosgood]

I found out last year that my aortic valve was leaking. I had no prior symptoms and have lead a fit and active life, I was 55 when diagnosed.

December 14th last year I had my aortic valve replaced along with my aorta and due to heart rhythm problalems had a pacemaker fitted.

Whilst I'm not 100% I'm not far off it.

If you have any worries or concerns then speak to your GP or cardiologist they can explain everything.

The operation itself isn't the problem it's the rehabilitation afterwards that takes the time and you will find this forum full of people who have gone through this experience and can offer advice and help.

It's perfectly normal to feel worried, to be honest it scared the crap out of me but actually, looking back, the surgeon's are brilliant and the nurses even more so so please don't worry. As I say speak with those that know and ask any question you want, I made a list if questions even asking about my diet etc. They will answer all of them and it does help with anxiety and worries but as I've said, just post on this forum and people like me will do their best to help you.

Good luck with everything and keep us informed if how it's going.

[Worried422 in reply to peterosgood]

Thank you so much for the kind reply. I hope you feel better soon.

[Isobel1]

Have you had any heart tests done ? Is that why they've said you don't need treatment at the moment ?

[Worried422 in reply to Isobel1]

Hi. Had echo scan which showed leaky value top of heart. Untreated high BP for 3 years. Edema in ankles and legs . Dizyness vertigo blurred vision breathless. Palpitations. Was took to hospital with BP of 210/110 ECG clear. Now I can't stand without going lightheaded. Pounding in neck n chest. Doc said no treatment neccasary. I'm seeking second opinion privately as I'm getting worse. Just started on meds for fluid and bp few months ago . Before they knew of heart valve. So at a loss as what is going on

[Isobel1 in reply to Worried422]

Are the meds working at all ? Have you been back to your GP ? If you're getting no help from your own Doctor , good idea to have tests privately .

[Worried422 in reply to Isobel1]

The fruisimide is helping swelling but bp seems to sky rocket soon as I stand up. Just increased it. The other symptoms and pressure getting worse. Gp has no appointment for foreseeable. Private go app next week. Hopefully he will help. I did read you can have mild leakage and severe symptoms. Hard not to panic when I've had weakness in chest n arm . Cudnt get up. Doc told Me anxiety. Obviously not. Was hoping someone could tell me if symptoms sound familiar.

[Isobel1 in reply to Worried422]

I think you should tell you GP receptionist it's very urgent & make plans to go private for tests, good luck !

[MountainGoat52 in reply to Worried422]

BP normally drops when you stand up, hence why you feel dizzy and want to pass out... I pretty sure it's called postural hypotension.

[Worried422 in reply to MountainGoat52]

Thank you. Except when I sit down from standing or bending I can't breathe and pressure trying too. When I take bp it's always in 200)100 ish . When I lay down at night I feel better but can't sleep

[MountainGoat52 in reply to Worried422]

Hmm, the leaking valve most likely means your heart has to work harder, hence the raised BP. I wonder what your pulse is when all this is going on. Maybe that is raised as well. It certainly looks as though you need some tests to get an idea of what is going on. With a BP around 200 / 100 you are at risk of having a stroke. I hope the second opinion kick starts some action!

[Worried422 in reply to MountainGoat52]

Thank you. yes out of intrest i left monitor on and walked into kitchen for a min and pretejded to do things then as i felt the lightheaded heavy feeling come on i hit go.. bp was 150/90 not that bad but heart rate was 90 and i walked ten yards . Think you are right

[Worried422]

Thank you so much

[Jbeans]

Hi. When I was first diagnosed with AF my echo showed a mildly leaking tricuspid valve and mildly enlarged Left Atrium. My cardiologist however, said the echo was essentially normal though and was happy with the result. I am taking Rivaroxaban, Losartan and 6.25mg bisoprolol. I had a cardioversion in March which lasted til September but since then have been in AF. Tachycardia lasted only a few hours but arrhythmia is persistent. I do feel unwell all the time so I understand how you must be feeling. I too will he seeking a private appointment in the new year as I have been offered an NHS appointment at the beginning of June 2022.

[Worried422 in reply to Jbeans]

Im sorry you are going through that. It's not nice when you have to fight to be heard. Hope you get the treatment you need. Thank you for sharing . I will mention af to doctor. My ecq always has arythmia but normal arythmia what ever that means.

[G0dfather]

When they say Aortic valve is leaking is it mild moderate of severe. You would not expect mild leakage to produce the symptoms you are getting. Especially the swellings due to fluid. They need to dind out what is causing the symptoms so they can set a plan of action. Has the high blood pressure caused Cardiomyopathy I'm wondering ?

[Worried422 in reply to G0dfather]

Thank you i appricaite the advice. Will speak to provate doc on weds.