Hey there! I am a 34 year old female. The long and short of my story is this:
No intubation history.
History of possible GERD/LRD since 2002 or so.
History of cough and shortness of breath complaints since 2002.
Gastroenterologist dx me with Gerd. Nexium once a day back in 2002.
family doctor said breathing issues were asthma or "anxiety related".
Tried 3 different inhalers over 8 year period. Got much worse in 2006 when pregnant. Cyanosis of the lips and fingers while pregnant. No one thought it was too odd.
2 babies later, I became terribly symptomatic in April of 2011. fainted 3 times over a weekend and landed a 5 day stay in a hospital for syncope, bradycardia, and low BP. ended up post treatment with 4 different specialists, none of which found the issue.
Close to giving up, and short of being told I was "making it up", I went to the University of Chicago's Medical Center (the DCAM) and saw a pulmonologist who referred me to a vocal cord specialist, thinking it was vocal cord dysplasia. The specialist took video and said my tracheal seemed narrow. Sent me to an ENT (I had been scoped about 3 times before this!) who looked and said Tracheal stenosis. A CT scan multiple tests for WG among others later, I had my first dilatation in 12/2011. Went off of all inhalers and steroids. Lost 30 lbs in 6 months and became a new woman for the first time in years!
My second was in 6/12 and my 3rd in 2/13. I am now ready for my 4th.
My symptoms: Coughing like crazy. Inability to cough up phlegm. Raynaud's syndrome when really bad, bradycardia and lower BP when symptomatic. Now, my EP cardiologist says that my symptoms are cardiac in nature due to my reduction of blood oxygen levels.
So, that is the whole of it....
Anyone else out there with this? Your story? Your success? And more than anything, how can I keep from feeling like its a personal failure when I need a re-dilatation treatment. I feel like a freak who is just making this crap up with my friends and family (although they can see my struggles and are totally understanding.) But, its embarrassing and since its idiopathic, who knows what is causing this.....
PS: In the 18 months since starting all of this: I have run a Spartan Race, numerous 5 and 10K's, 2-3 mud run obstacle races and a full marathon. I just planned my races for shortly after a dilatation so I was ready to train and run! :)