Tracheomalacia

[ONYM]

Hi. I was diagnosed with tracheomalacia at the beginning this year. It's subglottic so right near my larynx and means that my trachea completely closes when I cough and collapses on expiration. After reading several posts across the forum, I wanted to see if anybody else has thus diagnosis? I've been treated for asthma since I was a child but over the last 10 years, hadn't been responding to the usual steroid/nebuliser treatments but my symptoms were getting progressively worse. This diagnosis came after referral to a specialist centre and severe asthma clinic in the UK. Currently taking 7% saline via Pari-PEP and this year will be my first winter with the diagnosis. They think I have underlying severe asthma as well as tracheomalacia but want to chat to others about experiences, tips and raise awareness of the condition.

[PMRPete]

healthunlocked.com/blf/post...

[Jandm]

I was diagnosed with tracheobronchomalacia about 18 months ago. I also have severe asthma and bronchiectasis. I am profoundly sensitive to chemical allergens, dust and fumes. Through constant irritation and coughing my airway finally collapsed. Moving forward, my best advice is to try and avoid irritants that make you cough as this causes further collapses. The pari-pep really helps to keep your airway open and clear secretions to help prevent the perfect breeding ground for bugs. I take masks with me everywhere, and don’t mix with anyone who has a virus, which incidentally, I wear throughout viral season. I found a really good mask online that helps prevent 99% of infections. I get a lot of strange looks, but that’s a very small price to pay for protecting your health. Getting a cold or flu is not an option!

You must take every precaution that you can to protect your airway.

If I can of any help at all then don’t hesitate to contact me via this site.

[ONYM in reply to Jandm]

That's really useful, thank you. Good to know that the pari-pep helps, dreading September coming around so great to read how you take steps to avoid infections. I'll certainly be in touch. Thanks again.

[Jandm in reply to ONYM]

No problem. I hope the advice helps and you stay well. Don’t hesitate to contact me.

It is difficult for people to understand how debilitating and scary it can be. We are at a very high risk of developing serious chest infections. No matter what people say, take every precaution to avoid viruses and bacterial infections. Don’t be afraid to cancel anything at the last minute if there is a chance of picking up a bug!

Stay safe.