diagnosed aortic regurgitation, plummeting fitness and no-one give a hoot

[Jules_peaceseeker]

had problems taking in full lungfuls of air, heart beat pain, went to A&E, all tests negative, got sent home. GP referred me to a heart doc for tests and during a stress test (no problem completing) was found to have a leaky valve (ultra sound scan). told it was very mild and sent on my way...

Now I get feeling of tremendous ingestion lasting for an age after any exercise that gets me even slightly out of breath. I'm wiped out after walking three flights of stairs. I don't know what to do regarding a) treatment b) maintaining fitness. I'm more or less discharged.

any advice? thanks!

[lettingoffsteam]

So you get chest pain after exercise?Did you get any chest pain during the stress test?Mild regurgitation shouldn't give symptoms however.How much exercise did you get before all this started?

[Jules_peaceseeker in reply to lettingoffsteam]

thanks for replying!

I get "trunk" pain like a terrible discomfort like indigestion. No chest pain at all. I can walk comfortably 10 k, but I can't run faster than a jog and as I wrote, I can't really jog. My nine year old outruns me.

Ive never been one for proper exercise :)) but have always enjoyed walking (on the flat). But now I can't even walk more than 20k a week. I'm wiped out for over a day if I do.

thanks again!

[lettingoffsteam in reply to Jules_peaceseeker]

Ah OK, that sounds uncomfortable.Has the GP suggested what the cause of this pain might be?I wouldn't think that it's heart related if you've been checked out though.Don't worry about mild regurgitation for now.Just out of interest I'm an anxious person and my anxiety has caused some of the symptoms in the past.That said I also have high bp and an enlarged heart too, so cardiac issues too.Do you suffer from stress or anxiety?

[Jules_peaceseeker in reply to lettingoffsteam]

Hi,

I am under a lot of personal stress but I don't "suffer" from stress or anxiety. I do know how it feels though as I have had two episodes of anxiety in my life and don't want a third!! It is truly awful.

[Jules_peaceseeker in reply to lettingoffsteam]

may I just say that many people here use so many new and foreign acronyms. I have no idea what they are talking about :)) I'm not a fan of TLAs

[Calliope153 in reply to Jules_peaceseeker]

Go to pinned posts (on the right of the screen) and click on Abbreviations and acronyms - hope that helps.

[Jules_peaceseeker in reply to Calliope153]

I did, no it didn't! :))

A hotlink from each medical definition to a lower level explanation would be useful I think..

[Jules_peaceseeker in reply to lettingoffsteam]

I had a brief look at "you" :)) you have been through it the last year haven't you.. How are you feeling today? You wrote you suffered al sorts of side effects from your meds. Do they settle down after a while or have you changed to more suitable meds?

[lettingoffsteam in reply to Jules_peaceseeker]

I'm still on the same meds but under investigation.My bp is well controlled but I still get some burning sensations in the chest, albeit milder.I recently had a 24 hour bp check and a five day ECG monitor.I've got a CT angiogram next Tuesday but don't see the cardiologist until the end of May.I do find that anxiety makes my symptoms a lot worse which is why I asked about you. So you are under some stress and have some history of anxiety.What do you find helps with that?

[Jules_peaceseeker in reply to lettingoffsteam]

I'm under stress but I keep calm. I think the damage is done!! I used to get quite wound up by things, but I don't now for a majority of the stressful times. I try to focus on the future picture and take comfort in what I'm doing now is for then. I think people get worried about living in the moment. I say enjoy the moment for soon it'll be the past

[Jules_peaceseeker in reply to lettingoffsteam]

Hi again,

I didn't say before but I'm having a CT of my heart tomorrow.. That'll be fun. I'll let you know how it goes. Any questions I should ask when/if I see the specialist? suggestions most welcome

[lettingoffsteam in reply to Jules_peaceseeker]

Ah I hope that goes well.I must admit I'm anxious about mine on Tuesday.Let me know how it goes.Thing is you have to wait ages for results don't you.This waiting game is difficult to cope with at the best of times but especially if you are prone to anxiety.When are you seeing the specialist?

[Jules_peaceseeker in reply to lettingoffsteam]

the CT is tomorrow, the specialist, I don't know.... should I?? :)))

[lettingoffsteam in reply to Jules_peaceseeker]

Well I've already been sent a cardiologist appointment for 28th May but I've had two tests this month and one on Tuesday so quite a long wait.

[Jules_peaceseeker in reply to lettingoffsteam]

I didn't see him after all. mistake over the booking. I'm hoping for next Friday...

[Zena166]

Hi Jules if your fitness continues to deteriorate and you still have symptoms it’s important to keep persisting. You know your own body and know when something isn’t right. Just because tests are negative doesn’t mean there’s nothing wrong. It just means that test is negative.

Maybe try and keep a diary of symptoms and monitor your responses. Take your pulse to monitor what it is doing. Just so you have a complete picture of what your heart and general health is doing.

I hope it settles for you but if it doesn’t do keep going back.

Take care. Zena

[Jules_peaceseeker in reply to Zena166]

thank you Zena,

I will invest in a finger pulse oxygen thing. They only cost £15 on amazon. Perhaps a blood pressure monitor too.. Then I'll make a nice spreadsheet!!

[Tessie28]

Okay Jules, horrible not knowing. So, and some may not approve. I would get a cardiologist privately. Mine did an echocardiogram and there it was, poorly valve. Okay then you may be reassured or refered on to a surgeon. You see this surgeon privately then if needed you transfer on to his NHS waiting list. Yes I believe in the NHS but waiting a month for an echocardiogram in a state of panic wasn't an option as I have symptoms. I appreciate not everyone can afford to do it. But so far it has cost me the price of a week in a 3 star British hotel. Good luck whatever you do.

[Tessie28 in reply to Tessie28]

Sorry seen your bit about a ct scan. Great it is a start.

[Jules_peaceseeker in reply to Tessie28]

re, going private, that's what I did, but now seeing the same cardiologist on the nhs for the ct scan at the royal Brompton

[Tessie28 in reply to Jules_peaceseeker]

That's great get things moving. Hope it goes well.

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On checking symptoms from my op I came across this. If you are found not to have anything heart related you need to thoroughly research your symptoms. Just thought this may be a starting point for you it lists various symptoms associated with chest pain. One thing - don't get hung up with research but do make sure you get properly investigated. As previously said we know when our bodies are not right. medicalnewstoday.com/articl...