Interstitial lung disease

[DesignerS]

Hello everyone!
I am wondering if there is someone else here with interstitial lung disease. I was just diagnosed yesterday, and it is another road untraveled.

Definately came as a shock when the doctor called. It is from sjogrens.

Thank you!
Designer

[Carolina]

Dear Designer,

I have small airway obstruction, which is a bit like interstitial lung disease, I think.

I have had symptoms for a long time, but evidently it didn't show up on those breathing tests the doctors do routinely in an exam.

My condition was identified on a pulmonary exam last Fall, ordered by my Immunologist because there is an association between Small Airway Obstruction and my Immune Deficiency Disease (CVID).  I'm part of a cohort she is studying so she orders the test for everyone.

The three main symptoms: 

1)  I have a kind of wheezing crackling sound when i exhale strongly.   

2)I can't take really deep breaths. 

3)And if I have a lung irritation (dust, feathers) that triggers coughing, I can spiral into what is called 'cough induced asthma'.  That means the more I cough the worse it gets.  It becomes a loud horrible cough, and lots and lots of stuff is produced.  My cough becomes convulsive and scary. 

When cough induced asthma, the cure is to STOP COUGHING!  I must force myself to stop coughing.  As soon as I can do that, the entire episode stops!

The first episode of Cough Induced Asthma occurred in 2014 when we were in Paris.  I had no idea at first what was happening, but I remembered that one of my grandchildren had has this, so I Googled it (at 3 am) and sure enough, the 'cure' is to stop coughing.

Here's what the Mayo Clinic says about ILD.

http://www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/basics/treatment/con-20024481

An this is very comprehensive and technical article about small airway obstruction.

http://err.ersjournals.com/content/22/128/131#sec-4

It describes the connection to Sjogren's and to CVID.  But it's a lot of work to read!

Regards, Elaine