What the hell is tracheomalacia?

Don’t worry, that’s exactly what I thought….

Ever since I can remember, I’ve always been one of those cool kids who carried a blue inhaler around with them, got a little bit wheezy in winter and was stereotypically below-average in P.E. A classic asthmatic! Despite a handful of hospital admissions as a child, it was never something that caused me major issues until I reached 18 and went to university.

Fast forward to January 2018, at the age of 28 I was finally diagnosed with tracheomalacia. This was the result of 10 years of progressively deteriorating health that hit me harder during the winter, took me longer to recover and just “stopped feeling like asthma.”

What is it?

In a nutshell, it means that my windpipe (trachea) is pretty floppy (malacia). The usually ‘C-shaped’ hard cartilage rings in my trachea are soft, which causes it to collapse when I breathe out and this almost completely closes when I cough. The area of my malacia is the subglottis, which is the lower part of the larynx. These images show what happens. I guess the only thing to add would be an ‘Image C’ which would be me coughing and it’d look almost completely black.

What kind of problems does this cause?

I guess the thing that really causes me issues is that I can’t effectively clear mucus from my airway, which is why I get infections so much and in turn, this causes problems with my breathing. If you think about it, when you cough, normally mucus is cleared but if my trachea pretty much closes after coughing…the mucus gets stuck and starts to hang around which makes me poorly! Secondly, it’s not so easy to breathe if your airway is blocked so there are pretty obvious issues there.

Some of the other ‘not so obvious’ issues this causes: Sleep isn’t very restful for me. Due to forces of nature like gravity, lying down means that my stomach contents push my diaphragm up which causes a change in pressure and puts more pressure on my already floppy windpipe. This means that I’ll frequently wake up during the night feeling pretty breathless.

My ‘floppiness’ is around my larynx and subglottic region. This area is important for things like speech as the vocal folds are here. They’re responsible for the pitch and volume of voice so damage in this area can have future implications on my speech.

How was it diagnosed?

The difficult thing about tracheomalacia is that it shares many symptoms with asthma and other respiratory conditions. The thing is, I wasn’t responding to asthma treatment for years, despite being repeatedly told “it’s just asthma.” This means that when you’re in A&E and subsequently, the respiratory ward of a hospital you are pumped with steroids, antibiotics and nebulisers and they listen for a wheeze and measure the success of the treatment using peak flow meters.

I hadn’t been getting better for some time and in December 2017, after repeated hospital admissions, a query blood clot on my lungs and somebody telling me again that it was “just asthma,” I had an appointment with a consultant based at a specialist respiratory centre. I was very fortunate to be seen by somebody who had been training in the department and was asked to cough. So I did. Based on the distinctive sound of my cough (a weird harsh-sounding, barking cough) and listening to my other symptoms, the doctor suggested I might have tracheobronchomalcia (TBM) and referred me to a specialist to investigate further.

January 2018 I had a bronchoscopy which confirmed tracheomalacia but the ‘floppiness’ was found higher up my airway (near the larynx) than in other cases. During the bronchoscopy, they were able to record what happened when I breath in, out and cough.

What next?

Fortunately, I am now being seen in the right place, by the right person and I’m being monitored regularly. I’ll talk about my treatment plan and some other things in future posts but I’d really like to use this space as a platform to raise awareness of tracheomalacia first and foremost as it’s a pretty rare condition in adults and causes lots of confused looks from friends, family and medical professionals. Doesn’t stop me feeling like a really rare Pokemon card though!