Cystic lung disease

Hi all

Hope this finds everyone in good spirits.

I just wondered if anyone knows about Cystic Lung Disease.

A Specialist has said tests done are looking as this is a great possibility for what is wrong besides everything else, but would like some help on what is to be expected, I have been referred for oxygen set up, but cannot find out anything much at all everything goes to cystic fibrosis.

Can anyone enlighten me

Thankyou all

Ronnie

[mrsmummy]

Cystic lung disease represents a diverse group of uncommon disorders that can present a diagnostic challenge due to the increasing number of diseases associated with this presentation. There is an ERS article you may find helpful: err.ersjournals.com/content... "The main diseases in this group that are discussed in this review are lymphangioleiomyomatosis, pulmonary Langerhans cell histiocytosis and folliculin gene-associated syndrome (Birt–Hogg–Dubé); other rare causes of cystic lung disease... are also discussed." It is very clinical so don't let it scare you.

[Hidden]

Hello Ronnie I have a rare cystic lung disease, lymphangioleiomyomatosis, or LAM for short, as mentioned MrsMummy, it is uncommon.

Basically 2 things to watch cysts blocking your airways and making you breathless,symptoms more or less like asthma, but that why it is often misdiagnosed..

and cysts popping upon effort such as cough/ pressure, airplane pressure etc, that is to avoid.

They have all sorts of meds to ease your days, a healthy lifestyle and exercise despite fatigue is a great help.

Take good care of yourself x

Fran

[Hidden in reply to Hidden]

Thankyou Fran

I am still trying to get my head round it but this is one I have to go by what I am told and what you have said is very helpful, I will read the article mrsmummy has put up and hopefully this will help the understanding of it xx

[Hidden in reply to Hidden]

So many different types Ronnie, just wait until you have a proper diagnosis..honestly some of those lengthy names like mine look worse than they actually are..

In the end I was better off thinking I just had asthma, even severe asthma..in practice knowing I had cysts hasn’t made a difference except I can’t fly.

All I can add is don’t look closely at the prognosis because if you read those medical description you tend to think the worst, we are all individuals after all..one day at a time my dear Ronnie, today I walked to the village to pay my bills, I am at the pub having hummus, coleslaw, meatballs and drinking a small but cool beer ☀️

Getting ready for the shopping and the walk back but thinking life has its good points 😉

Bye for now x

Fran