Tracheomalacia in adults isn’t very common, or, it might just be that it isn’t very well diagnosed at the moment.
First of all, there’s loads of different things at play that aren’t easy to separate out from one another. Some people have congenital tracheomalacia, they were born with it. This could be due to underlying genetic conditions that mean the walls of the airway are already weaker before they’ve even taken their first breath. Or in some cases, they’re not sure what causes it at birth but it has been seen in premature babies. I was born 2 months prematurely but we’re still not entirely sure as to what ‘type’ of tracheomalacia I have because the second type is ‘acquired.’ I was hoping to ‘acquire’ a nice house in my late 20s, maybe a holiday but definitely didn’t think I’d acquire floppy cartilage.
Patterns and anomalies
Part of the reason there’s a lot of uncertainty as to the causes of tracheomalacia is because people with it often have other stuff wrong with their lungs. Conditions such as asthma and chronic bronchitis which are inflammatory and cause the trademark difficulty in breathing after catching infections.
The thing is, asthma is far more common and well-known. We can all think back to asthma kids with blue inhalers at school, we’ve heard people talk about pollution and asthma flare-ups on the news. When push comes to shove, I think most people are pretty comfortable with how you treat asthma. People talk about it, it’s pretty normal and nobody glazes over when you say you’ve got asthma.
Medical professionals know about it, there are protocols that exist, observations and measurements that can be taken that help people to know what to do when you’re running out of puff.
Because these things are so well-established, I got in to a bit of a cycle and I don’t think it’s a unique cycle to be in.
3 years old: asthma diagnosis and dungaree fashions (it was the 90s after all!)
3-18 years old: normal toddler, infant, teen sprinkled with the occasional blue inhaler and a handful of doses of oral steroids. Nothing to report apart from “being a bit wheezy in winter.”
18-28 years old: progressively more awful winters in terms of breathlessness, infections, hospital admissions, Darth Vader wheezes and shed loads of steroids, antibiotics, nebulisers and chest X-rays.
- During this time I was averaging about 5 trips to A&E and about 7-8 high dose courses of steroids per winter
- In A&E, it’s an emergency situation and you are treated for the most acute problem. For me, that’s breathlessness and infection.
- It says that I have asthma on my medical records and so, I am treated aggressively for a flare-up of asthma.
- This makes sense at the time because I’m usually not able to speak and I’m being treated for a problem that fits with patterns of previous admissions. It’s also completely understandable that this protocol is followed because it’s A&E and doctors want to help me breathe again
- The difficulty has been that for the last 7 or 8 years, I’ve not been responding in the normal ‘asthmatic way.’ My peak flow has been erratic at best. It’s not showed improvement after nebulisers. I’ve not improved after steroid treatment and, more importantly for me, it just hasn’t felt like asthma. The wheeze didn’t feel the same, my breathlessness just wasn’t the same and I knew I didn’t feel right.
I mentioned in my first post that the cough is what ultimately led to my diagnosis. This is absolutely true. For the past 7 years, I’ve been under various respiratory consultants in Sheffield, Oxford and now in Manchester. They’ve tried various combinations of inhalers, medication and lung function tests to unpick the problem. It wasn’t until December 2017, after a month of hospital admissions and puzzled doctors that I got to see a doctor who just simply asked me to cough.
She asked that question and knew how to recognise the distinctive ‘tracheomalacia‘ cough because she had spent 3 months attached to a specialist centre. Not because it’s something that had been widely discussed in training and not because it had popped up a lot in clinics or on the respiratory wards. That’s why I want to talk about it, I want to raise awareness of the existence of tracheomalacia and the importance of looking for answers that might not fit with the normal patterns.