Simply waiting - MVR and dilated left atrium

[Mumthree]

I saw Professor Ascione yesterday - brilliant man who explained very clearly what was happening . But I think one of the hardest things is the “ simply waiting “. Waiting to see how the Mitral Valve regurgitation progresses, waiting to see if the atrium becomes affected , waiting to see if I get symptoms …. Nothing I do will really have a positive impact - a healthy diet helps ( I do ) moderate exercise rather than my usual HiiT and marathons will help ( Pilates my new thing !) but other than that wait and see and monitor . And I can’t stop thinking about what my heart is doing and all that is to come and all the potential ( negative ) outcomes . Is this just me and do I need to give myself a severe kick ?!?! Feel as if I am being astonishingly pathetic

[Fanfab1]

waiting is just part of the game and in hindsight finding ways to distract yourself may help cos there is nothing often you can do to speed things up especially if you have appointments in place. And especially if it’s a watching approach to see how you get on.

I would also avoid the negative language- I think again in hindsight through my own experience you have to use positive language or it will bring you down. It’s hard enough mate let’s make it easier for ourselves. I think negative narrative in our own heads does a great deal of damage. But again I say this from lived experience .

your not pathetic you’ve got some tricky issues on your plate which you just can’t change / resolve as quick as you’d like (can feel like a lack of control over our lives).

break the waiting down into chunks otherwise feels like an eternity- you are fortunate you can still be active just look forward to the next thing / the next day and each day will pass.

Again easy to say and not at all what I did at the time. accept also you will have anxious moments while you wait as that’s normal.

We forget to be kind to ourselves and so beat ourselves up.

👍

[Mumthree in reply to Fanfab1]

Thankyou - you are right - breaking into chunks is a really positive way of thinking about it . It simply helps too hearing someone else say it’s hard ! Appreciate your response very much

[SuperFluff]

You are not being astonishingly pathetic. İ feel exactly like you. Normally when you have a problem, the doctor fixes it. With MVR, it's 'we'll wait until it gets serious, then we will fix it.' This is not normal!!! Also, nobody can tell you when that is...could be years or it could not. İ hate having it hanging over my head. İ feel l can't long term plan.... My logical mind tells me to take each day as it comes. Someone wrote quite wisely on this forum about not ruining today by worrying about tomorrow. Totally agree. But it's hard - a battle with your emotional brain. I can exercise at present but I worry about not being able to, getting breathless all the time, living in bad health for years, then the op not being successful and me dying far too soon!!! Oh yes, every bad scenario, my mind has thought about! İ find the unfairness of it all tough to deal with too, even though I know life isn't fair. İ think it's natural to worry and be upset but it can't take over your life. Life is for living. I have also asked if there is anything else I can be doing besides exercise, healthy eating etc. You want to be able to do something about it...

When I first got diagnosed, I thought about my situation as soon as I woke up and last thing at night. Now I don't. But I am already thinking about my next echo in April. İt is hard for heart problems not to affect your mental health.

Enjoy your relatively good health now. İ am. When I walk briskly or jog, İ love it now and appreciate it! Everyone hates the waiting and uncertainty. İ just try and do the right things and hope!

[Mitchum in reply to SuperFluff]

Hello SuperFluff.

Can I just, if possible, put your mind at rest. When you say that "it's not normal", I'm glad to tell you that it IS normal! Please don't worry too much regarding a leaky valve. My mitral valve was monitored for twenty years before surgery became necessary and it probably "leaked" for twenty years before it was discovered. In that time I lived a perfectly normal life. Millions of people have heart murmurs without even being aware. Most never need surgery but I do appreciate that it's a worry for you and this reply is written with the objective of trying to alleviate your daily stress.

If and when the results of your echo change from moderate to severe you will almost certainly undergo treatment relative to your needs. I hope you can get some re-assurance from this.

[Mumthree in reply to SuperFluff]

You have summed me up to the letter - I am actually going to keep reading this to reassure myself I’m not going mad . Thankyou THANKYOU x