Has anyone heard of it or had any experience with it?

My mom was diagnosed with this after several misdiagnosis' and many different doctors.

ladypepper, it is a blanket term for ****, chronic asthma or emphysema etc.

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 :)

i guess they must have blanked out part of my reply,maybe it is a secret lol, i mean ****.

they r blanking out the reply, check out the other threads on this board it might answer more of your questions.

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.

Canyondweller is right, interstitial lung disease is a restrictive disease that generally effects oxygen transfer in the lungs.

These forms of lung disease include: Pulmonary Fibrosis, Sarcoidosis and allergic alveolitis.

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.

That blocking thing is weird... is it possibly letter after b and n and o and c??
C
O
P
D
this was something suggested before but never confirmed.

Did that work?

I don't know how I did it but I managed to post the same thing three times! Sorry! :jester:

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.

I think if you put a period after each letter it works but that really isn't how it should be written. I see on other posts that it is done that way.

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.

ya my doctor is pretty good, but i now realize what you both are saying about ild and fibrosis my ild can turn into fibrosis, i was checked for the alpha gene and it was negative, i smoked for 20 years a pack a day, my 02 sat is checked at rest which is about 92. i start pulmo rehab on tuesday and they are gonna give me the 6 min test,xolair shots work real well i have been taking them since august and i haven't had a cold or bronchittis since i have been taking them except for this week i have a minor case of it i came down with it on monday and got my shot on monday and i think the bronchittis is minor because of it.

Well crap im going to jump in here..lol
I had 3 xrays that showed intersitial changes and I have severe Asthma..
Ct scan w/o contrast was done and showed no scarring..Had A pulmonary function test and it was good..considering these "changes" and a lesion on my left lung from pneumonia..
So I think Asthma can scar up the lungs pretty much...
Unless my dr sucks ...thats always questionable.. Take Care

The coughing can scar up the lungs that is a given. Your PFT test should show if you have asthma. If you have a restricive disease like IPF/ILd you will have good FEV1 as you can get air out but not in. If you have a improvement in your FEV1 after bronchodilator that will show an asthma component. PFt's are more difficult to interpret than just numbers as there is a loop and flow chart that drs also look at but most people just concentrate on the FEV1 and DLCO and RV. I can't post links on this site but if you google PFT tests you will find out a lot about them. I just had a CT scan without contrast and all it caused was confusion till it was compared with other scans from before. I will never have another without contrast and this was a brand new machine. Was put on back and then on stomach which is the new way to do it. I don't think scaring and fibrosis is the same thing. Fibrosis is stiffening of the lungs and I am not sure they show up the same. Interstitial just refers to the area.

The coughing can scar up the lungs that is a given. Your PFT test should show if you have asthma. If you have a restricive disease like IPF/ILd you will have good FEV1 as you can get air out but not in. If you have a improvement in your FEV1 after bronchodilator that will show an asthma component. PFt's are more difficult to interpret than just numbers as there is a loop and flow chart that drs also look at but most people just concentrate on the FEV1 and DLCO and RV. I can't post links on this site but if you google PFT tests you will find out a lot about them. I just had a CT scan without contrast and all it caused was confusion till it was compared with other scans from before. I will never have another without contrast and this was a brand new machine. Was put on back and then on stomach which is the new way to do it. I don't think scaring and fibrosis is the same thing. Fibrosis is stiffening of the lungs and I am not sure they show up the same. Interstitial just refers to the area.
Thanks Canyon..I dont have the test in front of me..This test I had done was 2 yrs ago..I pushed for the Pft test b/c i freaked out when I saw Intersitial chages I automatically thought IPF..So she said Pft would show exactly as to what the lungs are doing..1st round without the breathing treatment was wondeful 2nd round with treatment was the same no change "then again I kinda blame the guy that was giving me the test he didnt give me enough time to really absorb all the albuterol"....She questioned if i even had asthma..So she sent me in for allergy testing and I was allergic to everything...Wanted me to go on xolair i declined for various reason.. Take CAre

It really should not take that long for the Albuteral to work. 15 minutes at most and it is almost a given that you will have an increase after the Albuteral. It does sound like you have asthma caused by allergies. I understand Xolair works very well but it is new and maybe you don't feel that you need it yet. Most people with Asthma can take either or both Singulair and Advair with some relief.

Has anyone heard of it or had any experience with it?

My mom was diagnosed with this after several misdiagnosis' and many different doctors.
Interstitial lung disease is a scarring inside the lungs. I have been diagnosed with this. It is also called Pulmonay Fibrosis. Look it up on the net.

hi chewbug, I did look it up and it said ild is a general term that includes a variety of chronic lung disorders, but leads to pulmonary fibrosis, so if i have early ild that means it will turn into pulmonary fibrosis?I am 38 with a lung function of 35 % and i am on inhalers and such but no o2, do you know what ground glass opiciates are? they were on 3 of my cat scans.any info will be appreciated, i am still learning about it but i have been in denial for a year.

I know of someone who had it because they couldn't figure out what was causing the problems. Have you had genetic testing for cystic fibrosis? Until recently they only started testing for more mutations. I know of several people who were diagnosed with CF as adults after years of problems -- misdiagnosed as asthma, celiacs...

that is something i will look into, but i don't cough up mucous or sound congested?;'hhhhmmmmmm.

I have ILD- my problems started approx. 1 year ago - lung biopsy was done in May. I am trying to find someone that can give me some hope. I am tired of feeling so tired all the time and have gained so much weight on the prednisone. I'm only 38 years old! Any imput would be so appreciated!!:)

Has anyone heard of it or had any experience with it?

My mom was diagnosed with this after several misdiagnosis' and many different doctors.

I have Usual Interstitial Pneumoritis.

Usual = Chronic Pneumonia... Interstitial mean inside your lungs and Pnumoritis

The Pneumonia hardens and turns into scartissue and then Arthritis sets in
at this time there in no cure... There is some meds to treat it with but in my case, it would reduce my immune system... Bad news is when diagnosed there is a 3 to 5 yrs life expectcy. You can read up on it more by going to

http://www.righthealth.com/search?t=vhealth.all&out=health-goog-sb&lid=goog-ads-sb&q=interstitial%20pneumonitis&o=classic&v=Health

I am so sorry for the diagnosis, you and your mom have my prayers

Has anyone heard of it or had any experience with it?

My mom was diagnosed with this after several misdiagnosis' and many different doctors.
Ladypepper, it is a scarring of the tissues of the lungs. There are different types of this. You do not have to have been a smoker to get this either. Frequent bouts of bronchitis or pneumonia can cause it. I,m sorry to say there is no cure, but staying as active as possible and taking the meds the doctor gives you are a big help.

Ask you Doctor about pulmonary rehab? It can help people with breathing problems tremendously as it teaches them how to use their lungs more efficiently and by being in shape you require less O2 to the muscles. Sometimes only steroids work for IPF/ILD but sometimes some of the bronchodilators help. It is trial and error. Sorry you have this. Usually they will try and find the reason. Sometimes it is because of an autoimmune disease. Sorry if I am repeating things I did not go back and read all 7 pages.

a ct/ct pulmonary angiography was perfromed on me back in 2003 while I was a patient in the icu after having bypass surgery on my abdominal aorta and having problems breathing. At the time nothing was mentioned to me about them finding anything unusual and if not for going through some old papers to throw out the other day I would never have known any of this. Still not sure of what to make of this report so I was hoping that by posting it some of you will kinow what it means.
The findings state:examination sensitivity is somewhat limited by the fact that there is interstitial and alveolar disease throughout the lungs.
Mediastinm shows multiple lymph nodes in the pre-vascular paratracheal and hilar regions. The largest paratracheal measures 9mm in short axis.The largest left hilar lymph node measures 8mm in short axis.These findings may need follow up after the patient resolves from this acute episode.

From the looking around on some of the boards regarding interstial disease I'm sure I probaly need to get this looked at especially since I have had a chronic cough which my doctor who knows nothing of this report, has been treating me for, for the last two months.

Anyone who can give suggestions, please do. I can honestly say I was totally surprised by this report. If it could be so bad, why didn't they tell me this in the hospital?

Thanks for reading,
Dee

Dee, you should definetly send a copy to the Dr. that is now treating you so that he has had time to go over it before you see him again or if he is the type that takes time with you he can read it then. Some Doctors just don't allow enough time. From what you posted it sounds very much like this should have been followed up on. With fibrosis often the jobs we have can cause this as well as other environmental issues. Sometimes it just is somethng that happens. In any case I really believe someone dropped the ball. Since you were asymtomatic then someone didn't feel it was important and it wasn't why the test was ordered. I have had the same problem when other things are mentioned on a test that do not relate to the why the test was done. I have made if very clear to my Doctors that I don't like this approach and if it was mentioned by the radiologist I want to know about it and the what and why's. I would imagine you Dr. will want another CT scan of chest now.

My husband was just diagnoses with UIP USUAL INTERSTITIAL PNEUMONIA he had his biopsy 3 weeks ago. The last job he was on he inhaled silicia dust he is a pipefitter and he said as the day went on he was getting sicker and sicker and very fatigue and cold he was about a hour from our home and as he drove home he had the chills so bad that he had trouble driving. When he got home he went stright for the shower and jumped in bed he then told me how sick he was I took his temp and it was 103 I took him to ER and they did a ct scan and said it looks like Pneumonia so they gave him his meds. Two mo later he was sick again with pneumonia and he ended up in the hospital for one week very sick. They brought in a pulmonary Dr in and she said what he has is from his work. Now we are waiting for UC Hospital to call us to start him on the treament I am so upset we got a second dr and he said you can live up 3 to 5 years and he is still young enough to be put on the transplant list. Is ther any hope I can't belive how this can happen so fast. Also my husband has been getting ct scans scents 2000 he also was exposed to abestos in 2003. and all were just fine............ Has anybody lived threw this. please help.

I wish I could tell you more about this. If he worked around asbestos that probably made this much worse. If you are going to be treated by UC you should have the very best treatment possible and they will be in a better position to help you and tell you what to expect. My experience is with obstructive disease, not restrictive but my only advice is to be aggressive and make sure that the Doctors know that you will not be the type of patient to just shake your head Yes at everything said. Much of our healthcare now with any disease has to be proactive on our part. I find that women are better at this than men as men tend to just accept what some Doctor says so hang in there and until you talk to UC and feel you are getting the best treatment try and think positive. There is always one Doctor out there that will try and give you bad odds. There is always hope and even if it comes to a lung transplant they are very successful now so chin up.

Thanks for the advise, I am trying to find out so much about the UIP and when you look on line they seem to put all bad. I get so mixed up from Dr to Dr. they all say something different. Yes I know UC Hospital is a good hospital the papers were sent over last week.so we are waiting for uc to call. I want to get moving on this. When you look at a person and they look fine it's hard to think of them sick inside.I hope I can stay in touch
cheryl

I have been told i have Jo-1 antibodies for anti synthetase (a type of ILD)and have developed shortness of breath since Dec. I do have a dry cough and have problems breathing when i do exercise. I have had 3 chest x-rays and nothing ever looks wrong. After i go up stairs my chest hurts and SOB. If i have ILD would albuterol help with breathing problems? I tried a treatment and it did not work. It made my heart race and i got really mad. Total mood change. I would have thought that it would help.
I am going to the dr tomorrow, would you ask for a chest ct w/ contrast or w/o. And do you lay on your stomach?
Thanks.
Ang

Hi all, im new here.
I was diagnosed in 2002 with UILD/ILD, it seems to have lots of different names it goes by. Anyway, an allergy doctor found mine, which I was passed on to a pulmonogist. Right away he told me how bad it was...thought for sure I'd be dead within the next few days w/the way he talked. I had a not sure what its called, bronchoscopy? where they go in thru the base of your neck to take a sample of your lung tissue. They didnt or couldnt find anything that way, so he did a lung biopsy..Ouch, painful! Then was diagnosed with UILD. That was in 2005, im still here despite the awful sayings of lifespan of this disease.
Ive since been on o2 at night and when exercising/walking.
Lately, the past two months, Ive got this horrible dry, crackling cough that won't stop. My voice is hoarse from all the coughing. It's really bad when I get up in the mornings, if I drink something hot, seems to help a bit.
I have contacted my pulmo several times about this, cuz lymph nodes at base of neck are constantly swollen. Which makes my shoulders, neck & chest hurt most of the time.He says "your ok, theres nothing wrong" AAhh I wanna strangle him sometimes, he just doesn't seem to care. I know lymph nodes shouldnt be swollen all the time, that it means infection, but can't get him to do anything about it..gggrrr!:mad:
I have an appt in August at the National Jewish Hosp. Respiratory Center. Can't wait to get there, I hope their more concerned than my current pulmo.

Forgot to mention...was told I developed this from growing up in the Midwest, something in the soil?? Sounds bogus to me, I grew up on a farm & have 4 siblings, they don't have this, only lucky me!

I am sure the NJ will get to the bottom of this for you. I have heard nothing but great things about them. Be aware though that the elevation may affect your breathing. Always thought it was a weird place for a lung disease hospital. You will probably need O2 24/7 while there according to those I know that never use it but have to use it when there. There is something called Farmer's lung disease and molds can get in your lungs. Doesn't mean everyone in the family will get it. Not all smokers get lung disease, only about 15%. Good luck and please let us know how it turns out. Sounds to me like you need some Prednisone to get rid of inflammation. You didn't mention what meds you are taking.

Hello All,
I have stumbled on to this site and your posts are very informative.

My Mother was diagnosed with ILD, I think back in Oct. They had found a tumor on her left lung and did some breathing test to see if she was fit for surgery, the surgeon said "no way". She did not transfer enough oxy between the lungs, half of her lungs were already hardened and with only 1/2 of a good lung she would not
survive surgery or life without a ventalator (she was only ransferring 11%, not sure what you call it).

They instead did chemo and radiation to reduce the tumor and the chemo for a lymph node. She was had been coughing a lot and she always said it was "allergies", she smoked and work in resturants for 60 years, they said that smoking did not cause it but it did not help it.

Moving on to the cancer treatment she got sick and devleoped a UTI during chemo which put her in the hospital. Almost immedialty she had to be put on oxygen, SOB, caughing so hard but nothing coming up, all the dr's said it was her lung disease and not the cancer or the radiation. She continued to do the 38 readiation treatments and only 6 out of 12 chemo.

Moving on, after her treatment of course the tumor shrunk to 1/2 and will continue to shrink according to the radiologist, we go at the end of the month to see. K, bring us today, she has RA and osteoprosis and compression fractures she is on 5 mg of predinsone and has been before the cancer treatment, and oxy 3Liters since December. We have waited until she has recovered from the treatments before we went back to the lung specialist, of which I do not like, the only information we recieved about the ITL was from the surgeon. We need to check into this lung thing, she is very tired and in pain from the osteo fractures but complains about her air more than anything. At this point she will problay never be off oxy, she can't walk 50 feet and back without it, she get's so exhausted afterwards. There is a major crackle when she breaths but she does not cough anymore and she does not smoke anymore.

With the predinsone for the inflammation in her joints and from what I read here for the inflammation in her lungs is that all they can do for her. She is on pain med's for her back and her chief complaint is the tiredness, she finished radiation the middle of Feb which should be ample time for the fatigue to reduce somewhat.

I read that this disease causes fatigue, have you found that it does? I thought maybe it was the pain med's causing it. I would love to see if anything would help her not be so restricted by the oxy, and maybe only have it at night when she sleeps. She is a very proud lady and hates to go out and have people see her with the oxy on, so she does not go out.

We go to many Dr's, rummy's, Gp, radiologist and oncologist, one trip per week is all she can do, I want her to see a lung specialist but afraid that after the trip they will just say nothing else to be done, but then I think let's try and get her to one, you never know. Any advise, we also live in the midwest with the "bad soil" and farmer's lung, my Uncle on my husbands side has it also.

Any thing any of you all would suggest, I would love to see her out and about her house and not stuck in it all the time, the high humidity here just kills her both breathing and RA, I want to see her better but I am wondering after reading your posts if is the ITL that is hurting her more than what I have thought. God Bless and any advise is so welcome. Denise

I use Spirvia am & pm & take an allergy decongestant pill at night to help the coughing a little bit,think im getting to use to it, doesnt seem to do as well as it used to. I don't take any other inhalers, ones with abuterol make me extermly jittery & give me a bad headache. I use a nebulizer w/X?? oh cant remember what it is but starts with an x, helps a little.
I usually wear my o2 when doing any walking, even in the gocery store, I use a D cylinder and carry it in a North Face Hydration backpack, fits perfectly.
I googled farmer's lung, noticed they also call it Histoplasmosis. I remember my lung dr asking me if when I was little if I played with birds. I thought then he was outta his mind, we had chickens, but no i didnt play with them. I
have asthma & had alot of bouts of bronchitis when i was growing up. Out of 5 kids, Im the one with all the health problems, I wil gladly share them with my siblings.

Unfortunately ILD does not respond as well to inhalers as COPD does because it is a restrictive disease where you can't get air in. We with Copd can get in plenty but we can rid ourselves of it so our lung hyperinflate to handle it. Oxygen and Prednisone are about the only two options. I have heard of one person that was able to be helped some by Spiriva but she had a very rare restrictive disease. She has since had a lung transplant is off O2. She was up to 12 liters but her will come back as it is genetic. Albuteral may help for immediate relief (Xoponex is the one you were looking for) It is basically the same as Albuteral but doesn't cause the heart to race as much. O2 should be thought of like a prescription and used as the Doctor says. It will prolong life and help the other organs stay in better shape. There does reach a time when there is nothing that can be done to improve life unfortunatly. The problem is that the Prednisone is making the osteo worse in your Mom's case. So it is a catch 22 situation. I hope she is seeing an osteo specialist. The worse it gets the worse her lungs will get as she can't stand up straight. There are weighted vests but don't think with lung disease they would try that.

Thank you Canyon for the info, here I've had this disease for 4 yrs, thought knew lot about it, Thanks to you know little more! yes that was the name of the meds for nebulizer. :)

Quick question, if they did a biopsy of tumor on her lung would they be also able to tell
what for sure what the disease is. She has had numorus CAT scans w/ contrast and each time it talks about the lungs but I have not really looked to see what they did say, even if I understand it. Do you guys feel really tired and exhausted? Her rhumy cuts her predinsone down every time we go and then in a couple of weeks we call and he raises it up a little, because of her Athritus. She is unable to take the med's for osteo because the side effects are nasty. I will search for a specialist she can get to, sounds like she may need it in the future. I have also looked into the back brace also, you make a good point Canyon, it only elminates like 38% of the pain but she is starting to have that hump coming on and I do understand about that and the lungs, never thought of that before. It sounds like 3 ltrs is not very much O2 compare to 12, how much are you prescribed Bad. It all sounds like a catch 22, she is 75 never been to the Dr's ever until the RA and then she had retired a year ago in Feb, and all of this hit in June when she agreed to go and find out what was wrong with her hands and knees. She is seeing a rhumy is that an ostero specialist? I wish she was able to take the Bonevia or Fasamax but she is unalbe to eat anything with them. i think that she needs someone else, but we have been so comsumed with the oncologist and radiologist we have kind of put this on the back burner until know that she is better with the cancer. Who knows but I do thank you guys so much for the help, I need it still, Denise

Hi Denise,
I usually feel tired all the time, sometimes just breathing hurts. I have a young son, so gotta keep up with him. He knows I have a lung problem and can tell when I'm pooped out, he lets me take a breather. Past few weeks I've been miserable had a constant crackly cough could not get rid of. Instead of going to lung dr, who always tells me nothings wrong. I went to family dr. who gave me a pres. of antibotic Z-pack, this is only the 2nd day ive taken it, but feel almost 100% better. The wheezing has stopped, I feel like I can actually breathe like a normal person. I have UILD only have 50% lung capacity, so when i get a cold or sick its not fun. I wear o2 during the day 3 ltrs, at night 2 ltrs. Since feeling better I feel as I could go w/o it, but really afraid to try. Before I go to bed I take an generic decogesntant/allergy pill, Spirvia, and sometimes a nebulizer w/Xpenox? (dont think thats how its spelled) For my non-stop coughing got a pres. cough syrup w/codeine, tastes awful, but least can sleep.
Best of Luck with your Mom! :)

May I interject with a few answers. Interstitial Lung disease is not asthma, chronic obstructive lung disease, or emphysema (sp). It is a restrictive airway disease. unlike the above that deal with the alveoli of the lungs, this disease deals with the tissue that surrounds the lung sacs making it difficult to transmit oxygen and blow off carbon dioxide, therefore, a person with this disease retains carbon dioxide. I have this caused by lupus. It is not a fun disease to deal with. unlike the other mentioned lung diseases, it makes taking a deep breath difficult and makes climbing stairs and any activity difficult due to shortness of breath.
pearl

Pearl,

Do you take any medications that help you. My Mom seems very weak and tired
but she has been through a lot the last 6 months. Hopefully we can get her strength built up enough where we can get her to a lung specialist. Is there anything in your experience that you could advise me with? I would appreciated it very much, Denise

Antibotics for ILD?
Just wondering if anyone has had any luck with taking antibotics when getting an infection with having a cold & ILD? Where it feels like theres an elephant sitting on your chest, just feels hard to breathe & nothing else seems to help.
Thanks

Denise
I take an Plaquenil (used for maliria (sp) ) but my use is for the inflamation on the lung tissues to help decrease and stop furthur damage. not so sure if it helps yet. I dont have much stamina and get fatigued and short of breath easily. I also deal with interstial pneumonia often and pulmonitis. These just make things worse 10 fold. I dont know of any tell tale cure except for a lung transplant but in my case because the interstial lung disease was caused by my lupus s.l.e. Its very difficult to explain the shortness of breath sometimes because there are good days and bad. give your mother my blessings.
pearl

thanks Pearl,

I do believe that her Rhummy suggested that med, instead of the predensone
that she uses for the RA. thank you for the blessings keep praying and I pray for
you all also. How much O2 do you use? I think I read where you use it 24/7
is that right? Sorry if not. Denise