I really don't have much information about my ILD. I guess I was so much more focused on the CVID. I guess I just assumed that it would go away as I recovered from Pneumonia and Swine Flu. It's almost a year later and I'm still COUGHING. I'm so tired of coughing!!! I go back to the Pulmonologist next month. He had told me in September that any improvement in my lungs would take place within a year (of the pneumonia). I know I've improved because I'm no longer on oxygen but I'm still coughing. Do any of you ever check your oxygen levels? I'm just wondering. I bought a pulse-oximetry and sometimes my levels are in the 80's and sometimes in the 90's. I feel really lousy if it is 90 or below. If I sit down and rest, it will come up to around 96. My family doctor didn't seem concerned. Just wondered if any of you have similar experiences.

Your levels get in the 80"s and your doctor isn't concerned??? OMG thats horrible. My daughter was in the 80's once with asthma and was rushed to the hospital and admitted for 4 days! I was in the 80's when I was at National Jewish in Colorado and they were VERY concerned, stuck my butt on oxygen the whole time. ILD doesn't get better on its own, it will just get worse. Now, like CVID, different docs have told us different things. I was told the damage is irreversible and that all they can do is stop the progression and reduce inflammation. But it seems crucial that we all get treated so it doesn't progress. What did your doc tell you and why didn't he treat you? It is pretty rare from what I've been told and have read.

The problem is we have so many doctors... one for CVID, one for lung issues, one for everything else. It was my family doctor that didn't seem too concerned about the O2 levels. Maybe he wasn't as concerned because when I sat down, the o2 level came up. I'm going to talk to my Pulmonologist and see what he says. I was also told by the Pulmonogist that the damage (after a year) is irreversible. Hopefully, they can prevent further damage by keeping me "healthy". I'm taking Tessalon capsules twice a day to help with the cough. I also take mucinex every day. I guess it all helps. I'm still coughing a lot...(not has hard as I used to though)...not coughing until I throw up (sometimes). So there's improvement. I just wish it would all go away because it is annoying.

What is the ILD called that you have??

I was just diagnosed with ILD last week. I am waiting for approval for a chest CT scan and I am scheduled for a lung function test in early March. I think one of the challenges that we have is that there is not one doctor who deals with all of the aspects of CVID. The disease category is too wide. Thanks for setting this site up, Kelli.

Tina I had the lung function test, a 6 minute walk test (super important as it tests your oxygen levels while moving) and a fine needle biopsy. Agreed Tina, this CVID is too wide to have all things it causes treated by one doc. Again, we have to be our own advocate and push (sometimes too much) to get good care.

I don't know what type I have. The Pulmonologist just called it interstial lung disease. My other doctor .. I think said.. fibrosis (something like that). I really haven't researced it yet. Too busy trying to learn everything I can about the CVID. I had a CT scan in January because they saw a nodule on an x-ray. No one seems to be worried about it. The Pulmonologist said it could just be scar tissue.

I think the type matters. My docs here weren't going to treat mine. As a matter of fact I went since June 2010 untreated and it progressively got worse. Went to National Jewish and learned the type I have is deadly and very rare.

Miss Jenna - I asked the difference between LIP and GLILD today and was the differences are LIP is much more common, damage is reversible and not as deadly, you have a better outlook YIPEE lol I was like FABULOUS thanks doc! But at least I know now what the differences are. Start 40 mgs of steroids tomorrow :( I totally started crying in the doc office today about that

Kelli--I'm sorry about that.. I couldn't imagine going back on prednisone... That was nasty nasty... And I agree, I think it matters too about the type of interstitial lung disease..

I had my walking test & PFT & chest ct done today... I think they went good, well the breathing tests! IDK about the ct scans! Keeping my fingers crossed for good results :)

@ Tina - you are right, according to National Jewish this disease is made up of over 100 forms of ILD! It is too wide.

@ Jenna please keep us updated...I so want to know how your PFT and CT scan is especially since we are on different treatment. You are probably the "senior" sickie lol

Hi. My brother in law was diagnosed with ILD. Don't know what type but he seems terrible. I see not many are sharing for a while. I hope you are ok. I'm saddened for this horrible diagnosis and would appreciate your experience strength and hope. Prayers for you all.

Omg'sh hi there!!! I still check the board on occasion and boy I'm glad I did. Lets see I dont' know a whole lot about ILD. I have a very rare form of it caused by an immune deficiency. Does your brother have an immune deficiency? Mine is a slow progressing one that they know very little about so treatment for people like me varies wildly, so currently I'm not on any treatment but doing well. Welcome to the board!