Tracheomalacia

[HilsK]

I am trying to find any other people who developed Tracheomalacia as a result of extensive coughing during Covid Infections. This condition means that the tissues lining my windpipe (trachea)have been weakened and are not resilient enough to support the pressure changes when I breathe out. The condition means that I cannot clear mucus out of my lungs which results in multiple infections. I have a cough which resembles a dog barking but reminds me of when my children developed Croup. Coughing often makes me choke or feel as if I am choking.

Unfortunately, this seems to be a rare condition that Doctors at the hospital I have to attend never recognise and actually ignore when I arrive for emergency treatment. With Tracheomalacia, my O2 levels are high but can drop rapidly. However if I am given high pressure oxygen because they think I have asthma ( I have that too just to confuse matters!) I can get hypoxia and desaturate very rapidly placing my life in danger. I am usually too ill to intervene but this has happened twice in A and E and they totally don't know what they are doing. It is absolutely terrifying as I experience the inevitable happening and I end up in RESUS. What's more, when I tell them what IS happening they continue to ignore me and treat me as if I wasn't there.

I am desperate to find out how others with this lung condition cope??? Would so welcome any advice.

[Patk1]

I've tracheobronchomalacia greater than 90% collapse+ edac >90% on normal breathing and both extend down into airways of lungs + peripheries.ive asthma& bronchiectasis,both at several e levels + other probs.i do clear mucous with dedicated sessions 2x a day & as needed in between.Have u been taught controlled pursed lips breathing to open Airways? If not,read up on aluk website& practise so it becomes 2nd nature to use it whn Airways collapse.also physio told me the flutter device,aerobika,is useful to force them open.self management is key to avoid hospitalisations

[HilsK in reply to Patk1]

Thankyou That feel so helpful .. I do have an Aerobika which I find very useful and hospitalisations are an absolute no no if I ca possibly avoid them

[Patk1 in reply to HilsK]

The tracheobronchomalacia + edac at greater than 90% collapse are awful but I find no matter how bad,by keeping calm + slipping into controlled breathing,I can get some air in until they open.it is hard with mucous,but it's got to come up - are u on a mucolytic to thin it? I also use salbutamol nebuliser followed by hypertonic saline which really helps plus I'm on bipap niv x

[HilsK in reply to Patk1]

Yes Carbosysteine ,, I also use a NaCl nebuliser 10 mins after I use Salbutamol. It helps with absorbance and makes things less sticky. I was given a CPAP but find the pressure can create a situation where I find myself 'choking'

[Patk1 in reply to HilsK]

Perhaps the pressures need adjusting for you.can take bit of trial & error to get right.there are other masks too. I'd talk to Yr ventilation team xx

[HilsK in reply to Patk1]

thankyou .. i’ll do that !

[Bevvy]

It can be difficult to explain what is wrong when you are extremely unwell. I would have an information sheet with clear bullet point to hand to medics when necessary.

[HilsK in reply to Bevvy]

I now have a PASSPORT in place at the hospital I usually end up at which describes TBM and lists treatments that should be used and those that should not be used!!! I have yet to test this works

[HilsK]

Thankyou Bevvy …. sadly that’s exactly what i did … i also have the letter from my neurologist on my ipad but they will not listen .or even look at it. I have now taken this issue to theCWC and the hospital’s CEO

[Fresco]

Simple as it seems and I'm sure you do; do you have your conditions written largely on your person for when you go. Or wear a large Awareness bracelet I empathise with you as it is a nightmare to get the correct treatment fast

[Izb1]

What a nightmare, dealing with medical people that won't listen to you when you are so poorly is not only frustrating but blinking scary. I would certainly make a complaint to the hospital to ensure they listen to you for any future visits and ask them to put this down on your records. Hopefully this will make it clear so you get the proper treatment x

[Gilea]

I am also a woman and have TBM (tracheobronchomalacia) , mild to moderate COPD, TB scar on one lung and Covid scar in the other plus have long Covid. I was diagnosed by the Royal Brompton Hospital when they washed my right lung with 100ml of lavage and could only get 30ml out, plus they found I had live Covid at the bottom of my lung. I understand what you are saying and hope they have given you an ambulatory O2 unit plus I have O2 cylinders in the house, upstairs in the bedroom and downstairs in the lounge and office (I work from home) Earlier this year I had a right hip replacement and was kept in hospital for a further 5 days and on O2 most of the time. Then in June I broke my femur badly and had to be on O2 for most of the 5 weeks. If I let it get bad my fingers and toes go white and I have to up the O2 from 3 to 8 and that really helps.

Not sure where you live but they also say I have sleep apnoea, caused by the TBM, I am awaiting further tests as the machine helps keep the airway open they say.

Gil

07973165803

[Jandm]

Hi HilsK. I have TBM severe asthma and bronchiectis. TBM brought on by a continual cough through exposure to irritants. I was given a PEP for my nebuliser that helps to keep my airway patent. This was a godsend in terms of helping me clear my lungs and push open my trachea and bronchi. I also blow through a closed fist to mimic the pep when I’m struggling.