Asthma/copd and tracheobronchomalacia

[Cooperhart]

been diagnosed with tracheobronchomalacia, I’m only mild at the moment but my breathlessness is already awful, I’m struggling to get out and about, I have cpap for at home but does anyone know of anything I can have/use when out and about. Thank you x

[Alberta56]

Sorry you're feeling so bad. I can't help with your query, but I would think your respiratory team ought to be able to advise you. xxx

[eleanordigby]

I’m sorry, I can’t help, but just wanted to say hello 👋 I have severe asthma & bronchiectasis and my consultant thinks very mild bronchomalacia (not TBM like you.) He says the diagnosis can only be confirmed by bronchoscopy which he’s unwilling to do because it’s not risk free & there’s no treatment anyway. I presume you’ve had one though?

What do they think has caused your TBM? Mine is probably from lifelong coughing. I don’t need a CPAP. I can breathe ok sitting down & breathing gently, but as soon as I get up I become extremely breathless. Also airway clearance is terribly difficult because my lungs close up when I cough. They’ve given me two PEP masks with valves and using those I manage, but it takes ages. I daren’t skip airway clearance though because I’m colonised with pseudomonas & would quickly get pneumonia! Your life sounds a bit of a nightmare too. I’ve got no solution to our predicament - as you say, getting out & about is impossible. Maybe someone with more experience will come along…meanwhile, I can only offer solidarity in taking each day as it comes & doing the best we can 😘

[Cooperhart in reply to eleanordigby]

I have had a bronchoscopy, I was an inpatient in November and had scans and spirometry etc, I’ve had asthma since I was 1 years old now 57, they think inhaled steroids and continuous infections have contributed to the collapse, I’m also colonised with pseudomonas I’m on 3 months of nebulised colomycin at the moment, it is most definitely a nightmare and life changing, it’s so nice to know your not the only one though xx

[Patk1 in reply to Cooperhart]

I've tbm+severe EDAC,along with severe asthma,bronchiectasis + list of other probs.im on bipap niv.whn acutely ill or tired,I use niv lot more in day.i find remaining calm+ using controlled breathing techniques helps - along with sheer grit+determination.i take 1 day at a time x

[eleanordigby in reply to Patk1]

Hi Pat. What is the difference between TBM & EDAC, can you explain? Are you able to move about at all eg get up and walk across the room? Life must be so difficult, especially for people who live alone