Trachaebroncomailacia

[lisamariecharman]

I have just been for a day case appointment at Addenbrooke’s I had a broncoscopy which has helped with a diagnosis so I eosinophilic asthma and I also have been diagnosed with trachaebroncomalaicia also it is moderate to severe in both mid down to bases of both lungs and my mind pipe and now they are saying this is what’s causing the attacks of stopping breathing I have several more tests results that need to come back as well yet so I have to go back in 6/8 weeks for the full results and plans of action does anyone else have this condition and what do you do xxxxx

[WheezleSneezle]

I have both tracheobronchomalacia and severe brittle eosinophilic asthma. I’m on Cpap 24/7 to keep my trachea and bronchi open and on mepolizumab injections for the asthma. I’m also on a lot of pills and nebulised medications every day. I don’t meet people with tracheobronchomalacia very often so, although I hate that you have to suffer from it too, it’s great to meet someone with the same things as me. Wishing you all the best <3

[WheezleSneezle in reply to WheezleSneezle]

Oh I also have atelectasis in both bases and collapse of the small airways too.

[lisamariecharman in reply to WheezleSneezle]

They say this is why I have been intubated 4 times in the last yr as my breathing has been so bad xxx now I get this diagnosis which was a big shock as well as the asthma which they were trying to say I didn’t have x

[WheezleSneezle in reply to lisamariecharman]

It was a shock to me too as previously the “notch” in my spirometry graph had been attributed to poor technique and then possible vocal cord dysfunction which it turned out I don’t have. Then last year I find out it’s tracheobronchomalacia and also collapsing of the smaller airways. And now I am on Cpap 24/7 which I’m having a really hard time dealing with emotionally. I have been told that if I am intubated again it’s very unlikely they would be able to successfully extubate me. For this reason, the severity of lung damage I have, my Fev1 and FVC being very low and my lack of eligibility for lung transplant I have made the decision to have an advance directive prohibiting resuscitation by CPR or intubation or tracheostomy. It wasn’t an easy decision.

I hope that this never happens to you. I’ve been told that they can successfully treat tracheobronchomalacia with stents in many cases and other surgical procedures which I don’t know the details of as I’m not well enough for surgery. And Cpap of course which is hardly ideal but helps me.

I’m sorry you have to deal with this as well as bad asthma. It’s not easy. I wish you all the best <3

[Jandm]

You are definitely not alone! I have severe TBM, bronchiectasis and brittle asthma. I am profoundly affected by everyday household chemicals and fumes and the dreaded viral season makes this a particularly nasty time of year. I have >90% tracheal collapse, 100% left bronchus and 70% right bronchus collapse, but I have managed to avoid CPAP therapy, which I feel very grateful for.

My consultant keeps me up to date with new and pioneering treatments that are in the pipeline. The most hopeful one is an absorbable tracheal stent which will help to bring back some rigidity to the airways. With the advent of 3D scanning and printing, it should be possible in the years to come, to tailor make a Y shaped stent perfectly designed for the individual. 3D implants and moulds are currently used in other forms of implant surgeries with great success (orthopaedics) and that gives me a renewed optimism for the future of TBM sufferers.

In the meantime, the most important thing for us with this disease, is to stay as safe as possible. Try to prevent any flare ups and avoid all the things that we know affect us and exacerbates our condition. It can be incredibly frustrating, totally isolating and scary. Protecting what's left of our airways, could ensure that we can receive this treatment when it becomes available. This gives me hope for the future.

[lisamariecharman]

Well I use cpap day and night also I have been intubated 4 times in the last year and been on the big niv machines another 3 times so it is bad already I have been told to loose weight but I takesterpids on a daily basis and I it the weight on due to the steroids so that is going to take me ages to get the weight off as I am in a wheelchair and t6 paraplegic so I have otherdisbailites which really do not help good luck to us all by the sounds of things xxxx

[WheezleSneezle in reply to lisamariecharman]

I understand how difficult it is to lose weight while on steroids and relatively immobile. I’m in an electric wheelchair most of the time and when I do walk it’s around the house slowly with a pulpit frame. I have spinal injuries from a car accident as well as degenerative disc disease and severe arthritis (both osteo and inflammatory) amongst other things. Being tied to the cpap machine 24/7 like us isn’t great for mobility and exercise either. I hope we all find ways to maintain what quality of life we do still have and even improve on it.