Hello

[Melody2019]

I have been suffering from breathlessness, wheeze, cough and loss of voice for a year. Having been diagnosed with dysfunctional breathing and tracheobronchomalacia, but symptoms very similar to asthma and COPD. I'm just hoping to connect people in a similar situation, having lost my job and unable to do much really.

[sassy59]

Nice to meet you Melody and welcome to the forum. Hope you get some replies soon. Xxxx

[RoadRunner44]

Hello, What a long name for your diagnosis! I don't know what this is but evidently it's a lung condition. I suffer with bronchiectasis, which was diagnosed five years ago but I had the symptoms many years. before that but wasn't picked up.

I am writing to reassure you as you are not alone, we all have something linked to our lungs but find it so useful to be able to communicate with others who will understand how we feel. An old saying - a problem shared is a problem halved just about sums up how I feel and probably many others.

Keep posting, we are all interested in each others problems.

Best wishes, Chrys

[Ergendl]

Sorry to hear you've been having a rough time recently, Melody. Welcome to the group. I've learnt such a lot here since I joined in 2015. Hope you do too. And hope things start to improve for you too.

[Melody2019 in reply to Ergendl]

Thank you for the welcome.

[HungryHufflepuff]

Greetings and welcome 😊

[Melody2019 in reply to HungryHufflepuff]

Thank you

[GintyFerguson]

Lost your job not medically retired?

[Melody2019 in reply to GintyFerguson]

Well I left due to incapacity. Lol. But it has taken a long time to come to terms with it

[GintyFerguson in reply to Melody2019]

Yes, it does....but the trick is to grieve over the old life and focus on what you can do in the new life....

[12stargate in reply to Melody2019]

Boy, do I hear that Melody 😉

[Dedalus]

Hello and welcome

[WheezleSneezle]

Hi there. Nice to meet you!

I don’t realky post on here usually but I noticed you have the same condition as me - tracheobronchomalacia. I also have brittle asthma and damage from a lifetime of that.

Originally my “barking” cough was put down to reflux and then vocal cord dysfunction which speech pathologist said I do not have. Then it was apparently poor spirometry technique etc ad nauseum. Eventually during a hospital stay I was correctly diagnosed with tracheobronchomalacia and now I am on 24/7 CPAP therapy. It helps me a lot.

Have they suggested any kind of treatment for yours?

[Melody2019 in reply to WheezleSneezle]

I tried CPAP and it really helped but when I stopped using it it just made things worse. My consultant says my primary problem is dysfunctional breathing, which needs to get sorted by breathing exercises, then he will look at the malacia. So currently I'm not receiving any treatment , the breathing exercises I do at home, he says the voice loss is also due to the breathing, they initially said it was vcd,

[illawarra]

Hi Melody2019

Greetings and welcome to the group.I have tracheobronchomegaly. I think that is somewhat similar to tracheobronchomalacia. I was diagnosed with subglottic stenosis first then bronchiectasis and last year learned both issues are associated with tracheobroncomegaly. It is a very rare disease. Often it is not even picked up by radiologists. My consultant said he had only seen three people with it in all his many decades of practice. Happy to connect with you.

[Collie4]

Welcome.

Lots of friends here to chat with and reassurance. I’ve not heard of the long name you have been diagnosed with but we all have similar medical probs.

Take care, take each day as it comes.

[12stargate]

I kind of hesitated to share this. Having a hard time breathing is tough Melody, and I feel for you. I have trouble breathing myself sometimes. Last CAT scan they told me I had a shadow on my lung and to have it rechecked in six months.

I am grateful for doctors, but sometimes they scare me. They tell me nothing is wrong when I feel terribly ill. And then they tell me I have a shadow on my brain and my lung. The shadow on the brain is benign, and I hope the shadow on the lung is benign too.

What I hesitated saying is this: when we get a diagnosis That is as complicated sounding as the one you have, What does that do to the psychologically

[12stargate in reply to 12stargate]

I wasn’t finished.😊

I didn’t think I had a point but I do. Do you think it weakens us to hear this long complicated diagnosis?

How did you feel about getting this diagnosis Melody?

I better quit before I get cut off again. I am mostly just sharing thoughts.

Thanks😊

Stargate ♥️

[Melody2019]

I think when you are struggling to breath, and drs say there is nothing wrong, all your observations are normal, it's in your head. It is more reassuring to get a name for something, but to be honest it messes with your head either way. Being a 'rare' condition medical staff dont know how to deal with it or treat you as a patient. They have a lot to learn, unfortunately. I wish you luck. X

[ONYM]

Hi Melody, sorry to hear you've been having such a tough time. I was diagnosed with tracheomalacia back in Jan 2018 and also inducible laryngeal obstruction/vocal cord dysfunction as well as asthma. Happy to chat about anything if needed. I think it takes a long time to process, I've really benefited from accessing psychological support to help deal with some of the debilitating symptoms. Wondering if that's something you could access/if it might help? I think clinicians can really overlook the impact on your mental well-being when dishing out these diagnoses in clinic. Take care.