- CASE FILE
I have severe shortness of breath and cough, but my pulmonary tests are normal. It's like asthma, but it's not asthma.
ABOUT THIS CASE FILE
I want to help others with my story. I had severe shortness of breath on exertion and a horrible "seal like" cough for 11 years. When I got into a coughing fit, I would get pains in my chest and back. I was exhausted all the time and it got to the point where I could hardly walk across the room or even shower. I would tell the doctors it was hard to breathe. They did the usual pulmonary function tests and x-rays and all turned out normal. They did diagnose asthma, but the medicine for that didn't give me relief. Over the years, I was told it was all in my head, I was out of shape (I am overweight from steroids), I needed intense psychiatric therapy, etc. Doctors even yelled at me because they thought I was "faking". Finally, an interventional pulmonologist did a dynamic bronchoscopy, where I was awake and could respond to his commands. He then had me have a dynamic CT scan, where I breathed out forcefully instead of holding my breath during the imaging. These tests showed my trachea was "floppy" and collapsed on exhale. The condition is called tracheobronchomalacia or TBM for short. It is incurable and usually progressive. It's a mechanical problem so medications like inhalers don't give relief. I have had surgery to support my trachea, but I still collapse down in my bronchials where surgery cannot reach. This is a very misdiagnosed condition. Most people are told they have asthma or COPD and never know why the traditional medications don't work. Children are born with it, primary TBM. When it happens later in life it's called acquired TBM. No one knows why it happens and most doctors don't even know the condition exists.. Research is very slow because there is no funding except private donations. CPAP machines help because the forced air stents the airway open, but these machines are very expensive and insurance doesn't cover them unless you have sleep apnea. People get to the point where they cannot work, but don't qualify for disability because it's not a recognized disease. If you have a similar story and symptoms, and doctors won't listen or help you, don't give up. There is help out there.