Hi everybody!
I had a bronchoscopy last December, to be told that I had EDAC (excessive dynamic airway collapse). I have had no follow up meetings with the Thoracic doctor, as he said there was nothing to do. I was just told to keep my weight down, and look it up on the internet. I would appreciate any feed back about this condition. I have no idea if it's going to get worse, and it's making me feel anxious and upset.
How awful for you, don't look it up on the on the internet go to your GP and get him to explain you have a right to know. You take care and keep posting to let us know how you are. Love Bernadette 😳 xxx
Hi, Eva. There was a post about this earlier this year healthunlocked.com/blf/post...
Your best bet might be to contact the British Lung Foundation on 03000 030 555
According to the BMJ Thorax journal CPAP is a possible treatment. Very unkind to leave you without a proper explanation of what is meant. I hope your GP is more helpful. Good luck xx
Thanks so much for your comment.
Am no expert but think you need new Thoracic Doctor one who is interested.
I just did post on something similar.
You have my every sympathy as I would imagen you have had tough time with mucus and breathing AND last thing you need is tool of a Condescending Doctor
Thank you very much for your comment.
I will see another specialist, one who cares!
Best of luck with your health.
Hi I have TBM which is a dynamic airway collapse disease - When diagnosed I had long discussions with BLF who DO NOT support it or assist with it and were not interested in doing so as I am trying to raise awareness and funding into research for it. You should be under a specialist who deals with airway collapse as it is progressive and may need treatments. There is a good support group on facebook you could join. Pm me if you would like the details.
I have also just been diagnosed with EDAC and they are talking about possibly having a CPAP however I was also told to google. I was unaware there is a Facebook group but would be nice to speak to others
Thanks very much for your reply. I am finding it all very confusing. I went to another consultant as the doctor at the hospital had no interest in me whatsoever. The new consultant just told me that I should be prepared to take antibiotics at the first sign of onset illness. No one has told me that it can get worse over time. No one has told me that I need treatments, except a sleep study. I would be interested in the fb group. I am at my wits' end as I know nothing about EDAC.
Before the bronchcoscopy I could breathe without any problems. I just had crackling in my lungs when I got too tired. Now I am having difficulty breathing, especially in the morning. I take Ventolin for the breathing problems, although the hospital doctor said that it wouldn't help. It does! I have asked what happened to me during the bronchcoscopy as I feel much worse after this procedure...I had no breathing problems, to speak of, before this. I got the Ombudsman to look into the matter and the doctor is telling lies about his care. I feel awful. Not only has he made things worse, but he's denying that he didn't look after me after the procedure.
The new Thoracic doctor told me that I am probably just 'aware' of the breathing problem now. I feel that I have been used as a guinea pig, and that I have been cast aside as not worth bothering with. My case was just for his ego to further his career. The only thing I can do now, is to see a specialist in the UK as I am visiting this year. Sorry to go on like this, but I am feeling totally let down by the medical profession here in Australia.
Thank you joolz10 for your comment. I am seeing my GP on Tuesday, and will discuss seeing another thoracic doctor. ONE WHO CARES! I went to the ED last week, telling the staff that I was totally over the breathing problem...I made it known that the specialist who performed the bronchcospy didn't give me any help; and they totally ignored me! Every single word. The outcome was that I had costochondritis and that was causing the breathing problem. Total rubbish. I hope you are having the proper care you deserve.
Where are you living ?
My consultant is very pro active with this condition and has recently left Stoke on Trent to go to Leicester who are going to support his research into excessive airway collapse. I am requesting to transfer to Leicester to continue under his care. Will involve a 100mile round trip for hospital appointments but I am happy to do this as long as I can stay in his care.
Hello Sued, 5 years ago you were hoping to continuing to see your consultant when he moved to Leicester. Did you manage to see him there? I too have EDAC (which doesn’t seem as rare as it seems due to those who have written here) and tried CPAP but the masks and straps were unsuitable. Unfortunately that seems to be no alternative treatment. So I wondered how you have been getting on after 5 years. I certainly hope you are well. Best Wishes
I have since been back to my GP, and she has helped me find a good thoracic private specialist. Also the Ombudsman is looking into the lack of care I received at the hospital.
Thanks all your help xx
I was diagnosed with EDAC nearly 5 years ago. The contributing factor was excessive coughing from irritations caused by a multitude of products. I’ve also have severe asthma and bronchiectasis, so it was the perfect storm. You don’t mention how you think you may have developed this condition? I basically micromanage my environment. I avoid going anywhere because there are so many triggers….the more I cough, the faster I will end up on CPAP and I am not ready for that. There aren’t many options on the table other than looking after your airway as best you can. In terms of medications, mine are all asthma and lung treatments to control flair ups and infections plus something to dampen down tracheal irritations, it’s a balancing act between my conditions to maintain my optimal health, but once you find what works for you then stick to it
Airway devices
Don't know what to do
Not excepting oxygen
Worried. by Midge 🐶
