young out of breath and WAITING!

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rubywhistle

Well-known member
Joined
Aug 19, 2011
Messages
62
Location
Australia
Hi

I am new and I guess I want to share the story and vent a little…

Until 6 months ago I was a fit and positive young mum. For me a horrible night that seemed to come out of the blue left me out of breath, dizzy and panicking - I had felt a tight squeeze in my chest followed by pains over my upper body.

I ended up in emergency with an irregular heartbeat, palpitations, SOB and in a cold sweat. Many Drs and Cardiologists I met along the way went to great pains to tell me it was so unusual for a young person to have a heart condition and that it was most likely an anxiety attack …and ironically…I should not be worried about anything. My family and friends and everyone I know seemed to like those lines as well ‘you are young’ ‘you are healthy’ and ‘don’t be ridiculous’. I know it is what they wanted to believe but it made me feel angry and lonely. I have never been a sickly person or cried wolf! I pushed through work and home duties until finally I was exhausted.

When referred to a specialist I explained I did not feel the same since that night I was told it was 'physiological' and ‘everyone gets tired’. When the ECG and echo results came back I was told that they were showing too serious a condition for me… and that it did not match my current state (still working and doing home duties)….and were most likely wrong.

Finally a second echo and eventually transophegal echo (that I paid for myself to get answers) left us with the diagnosis - severe mitral valve regurgitation due to prolapse and rapidly deteriorating heart failure. Out of the six parts of the valve all six are damaged.

Originally given a date for two weeks after my diagnosis my surgery was cancelled due to heath insurance issues and now very frustratingly I am on a waiting list with no date. My family and friends are still in shock and I love them but they are not helping! (Still chanting ‘you are young and healthy’ ‘I heard lots of people have mitral prolapse and are fine’ and ‘don’t worry’)

I am amazed at the changes in body and mind that the mitral regurgitation has caused! Until recently (with the help of google) I have found my symptoms are actually normal – but defiantly not normal for me!

This site was great - I read through some forums and felt so much better. Talking about it even if its online will be better then bottling it up or scaring my family so what a great idea! THANKS!
 
Let me welcome you to an excellant site that will help you in your journey. You have already learned a valuable lesson: you must be your own advocate. Now, I would suggest you fight hard for immediate surgery and get on the road to recovery....the sooner the better! Good luck and keep posting!
 
Welcome to this wonderful place where you can just speak your mind, ask questions and feel you are NOT alone. Even though my problem was with the aortic valve (bicuspid) I learned of it when I was 12. Yes family doesn't always get it right away (bless their hearts) but now you need protect yourself from further damage to your heart by being very very persistent in getting your surgery done as quickly as possible. Once you are over that speed bump, it will be wonderful to be yourself again. I will look forward to your future posts and hope that all this is resolved quickly. :)
 
Oh, girl, I know EXACTLY how you feel. Night after night of coughing and being unable to breathe, unable to talk without gasping for breath, only to hear the internist say "Oh Laurie, you couldn't possibly have a heart problem and run dog agility!"

Ummmm, YA WANNA BET! By the time I got referred to a cardiologist, it was a case of "you're in a-fib, you need surgery, you shouldn't leave my office but instead you should check into the hospital right now." Hi, nice to meet you, we're gonna cut you open.

I mean, I really was DYING from mitral valve prolapse and heart failure!! Been there, done that. Keep pushing to get that surgery, my friend. You'll have a long road to recovery given how sick you probably are, but you'll get there.
 
Thanks guys! On a quick re read of my post I am a bit embaressed it all came out like that.. I am really positive and trust in the surgery/process very glad to have answers and a SOLUTION is a blessing ...but also very keen as you all mentioned - to get it done ASAP.

tprice54 --my Dad who is a Dr (gp) said nearly same thing - "you must be your own advocate" I do believe it!

edgargome & agilitydog --oh yes sounds like we have the same relations! yep bless em'
 
Hi from Melbourne

Hi from Melbourne

Hi there ... just a very quick 'hang in there'. I'll send you a message in the next couple of days. But we have great doctors and hospitals here and it'll get sorted. They WON'T leave you hanging if they know you need it urgently.
 

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