Thank you for the reply. So it basically is just anything that is a lung disease? Okay... that kind of makes sense. They really don't know what is wrong.
Another question, your reply has "a blanket term for ****, chronic....." What does the **** mean? LoL Is it a secret? lol
Sorry, I hate to disagree but Interstitial lung disease is not emphysema, bronchitis and asthma. That is **** chronic obstructive pulmonary disease. Interstitial lung disease is a restrictive disease and totally different in physiology. In **** you cannot get air out in restrictive diseased you cannot get air in. Sometimes people have both but ILd is less common and treated differently as the inhalers don't give much relief so usually on O2 and steroids are used though there are always new things. There are a number of restrictive diseases of which pulmonary fibrosis is the most common. If you search on line for ILD you will find more information. You mother needs a specialist in pulmonary fibrosis. They may want to do a biopsy to see what it is caused from as that sometimes determines treatement. It will show up well on a CT scan with contrast. It is a serious disease. Smoking will make it worse but probably did not cause it. it is caused sometimes by Rheumatoid arthritis, chemicals among other things.
Good grief, why would someone block out the most important medical term in this post. It is the most commonly used term for emphysema, chronic bronchitis and sometimes asthma. **** is the abbreviation for chronic obstructive lung disease and probably the only thing you will see on the diagnosis.
Well, you got it in there but that is not ILD but you can have both and they usually think of the "secret letter" one before they thing of ILD because it is more common.
well i have ILD, i don't have fibrosis,ILD is what they call numerous lung disease, i have early emphysema , c o p d , and severe asthma , on all my reports it says ILD, but canyondweller is right your mom needs to see a speacialist.if you look it up on the internet it will tell you more about ILD.
Thank you all for you replies. I hope you are doing well with you ILD marissamm. They put my mom on prednisone and it has really affected her badly... a lot of weight gain and she felt terrible. Now she is only on Immuran (SP?) and she is doing a lot better. In fact the last tests showed improvement. Thanks again!
marrissamm, I don't understand why you say you don't have fibrosis. the other name for ILD is Interstitial Pulmonary Fibrosis. I didn't want to disagree until I looked over all the sites but everyone I looked at said that fibrosis is part and parcel of it. It is a thickening and stiffening of the lungs. You can have both C.O.P.D. but that is not ILD. If you have emphysema you have that you do not have ILD unless you have some fibrosis. It is called IPF and ILD interchangeably so I don't understand why they would write ILD if you have emphysema because that is not ILD at all. Asthma is basically in a class by itself as it considered a reversible disease which emphysema and ILD is not. I know you cannot give site addresses but I couldn't find one that did not say the same thing.
hi canyondweller, well i went to a pulmonary speacialist a year ago and i continue every month on my cat scan results it said i have ild but no pulmonary fibrosis is evident,they were questioning pulmonary fibrosis but ruled it out and said it was ild, i looked it up and it also says pulmonary fibrosis or emphysema and other lung disease i wish i could give you the sight, and i asked my doctor what ild was and he said it is a lot of lung diseases not just pulmonary fibrosis, well i hope i dont have early pulmonary fibrosis that would suck. anyway thanx for the info it is was very imformative i guess i have to dig deeper to find out why my tests say ild.
Well, I hope it isn't either. this is the first time in my 10 years dealing with forums and lung diseases that I have heard one can have ILD and not some fibrosis but hey! I sure haven't seen everything. I will research it also because I am on a number of lung forums and have had lung problems for over 20 years so I try and stay really informed and read everything. I know there are many types of fibrosis and it is not unsual to have some with emphysema but I have never heard emphysema falling under ILD . Maybe it is like with asthma some Dr.s includ it with C.O.P.D. and others don't. I would think you pulmonary functions tests would show something also. I don't remember if you gave figures on those but they are usually pretty accurate in diagnosing lung disease within a certain framework. It is pretty rare to see a pulmonlogist every month among the people I know with pretty severe disease. Usually every 3 months as thing don't change that muchthat fast.
In theory you can have interstitial lung disease without fibrosis in the early stages, as in the early stages it is just inflamation of the alveolar sacs, its when the inflamation heals that fibrosis occurs (fibrosis is scarring of the lung tissue) which causes stiffining of the lung, this is what makes interstitial lung disease a restrictive disorder.
Pulmonary Function Tests in purely restrictive disease show a reduced FVC and FEV1 but with a normal FEV1/FVC ratio as oposed to obstructive disease where the FEV1 is reduced but the FVC remains relitively normal, therefore causeing a reduced ratio.
hi canyon, my fvc is 38% fev1 is 33% and in 3i cat scans the found ground glass opiactes? and it said early ild, i also have asthma i get a xolair shot monthly thats why i see him often, i am not on 02 but did smoke, i quit though but i have a rough time breathing all in all i had 3 cat scans and 3 pfts last year, i had prior surgery and developed complications with breathing then i found all that out and i am 38.i appreciate you and cats input and help since i am still new to all this
It sounds to me like you are getting the very best of pulmonary care and you definetly do have an obstuctive componet from the numbers on your PFT's. I assume they check you frequently to make use your O2 saturation is still good. Do you think you would feel better if you had O2 when active? Were you checked for the Alpha 1 gene yet as that is common in early emphysema. Your Dr sounds very good as I think Xolair is pretty new and works much different than inhalers and with them as an adjunct. Kat, that clarifies it a lot. I guess everyone I have known and talked to already had the fibrosis part when they were diagnosed.
