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I was diagnosed with Interstitial Lung Disease in Jan 2006 through a Lung Biopsy. Originally it was thought that I had pneumonia, but it didn't go away. I was treated with steriods (prednisone and cytoxin) for 3 years. I also was on oxygen therapy and at one time was on 10 litres of oxygen. Initially I was in bed and did not leave the house for 3 months except for doctor appoinments. I was in and out of the hospital 5 times in 2006. At one time, I had blood clots and had to give myself shots until this was resolved. During this time, I never gave up hope that I would survive and be the best I could be. When able, I was put on pulmonary rehabilitation and went to that for 2 years. My pulmonologist at one time said to me, "If this was as good as you could be would you be OK?" I was still on 6 liters of Oxygen and used liquid oxygen which I carried in a backpack. My answer to him was, "Yes, I could live like this, but I don't intend to - I WILL get better." I never gave up my positive attitude and with the help of my husband, relatives, the wonderful doctors and nurses at the University of Iowa Hospitals and Clinics, and talking with my Lord and Savior - I survived. Today, I do not use oxygen, and although I don't play football and run marathons - I lead a very active, normal life. My advice is "Listen to your doctorss, follow their advice, know that you can survive this and keep a positive attitude." I am a living example.

I am a 61 year old woman who was diagnosed with interstitial lung disease in 2006. I actually got sick in 2004, but they couldn't agree on a diagnosis. They called it ARDS and hypersensitivity pneumonitis to name just two. Now it is 2011. I have had repeated flare ups of this disease. Now I'm on oxygen 24/7 and taking immune suppressant drugs. The doctor may put me on prednisone which I hate because of all the side effects. We have discussed a lung transplant, but I don't know if it is worth going through so much agony to maybe live and extra year or two. I can handle how I am right now. I feel pretty normal except for the fact that I can't breathe well enough on my own. I use 4 liters of oxygen which is the only appearance that something is wrong with me. I am at a cross roads looking for answers. I see my lung disease doctor in two weeks and will discuss further the possibility of a transplant. Right now, I'm just not sure I'm ready to do that.

I went in for a biopsy in March 2011 and discovered that I have a condition called BOOP. I left the hospital on pretizone and continued to improve until early August 2011 (heat conditions in North Texas were terrible with over 60 days over 100 degrees), in this time we were lowering meds. Back in the hospital by mid-August where the docs did an Open Lung Biopsy. In this biopsy they discovered I also have Interstitial Lung Disease. I am just learning about the disease and wondering how it is going to impact me at 54 years old. I pray each day for a full recovery knowing that the current damage to the lower portions of my lungs cannot be repaired.

My father recently passed away from Interstitial Lung Disease. I always suspected him of having RA but the VA where he received all his medical care never tested or treated him for it. I myself have been diagnosed with RA but stopped taking methotraxate, prednisone, enbral, etc. etc. the enbrel shots only made my immune system weaker and in turn me sicker. My Father suffered tremendously in the end. He was unable to breathe without constant oxygen and in one year deteriorated until his death a few weeks ago. Something really needs to be done about this disease. If RA is one of the leading causes of ILD then doctors should advise patients of the possibility of their future. The VA doctors just pushed my father from one doctor to another none of them wanting to take charge of his illness. Now he is dead. I hope there is hope for me and others with RA. I had no idea until reading up on ILD that RA was one of the causes of the disease. Now I am worried for myself because I do not want my daughter or husband to see me suffer the way my family watched my dad suffer. I hope there is better treatment out there in the future. I hope and pray that all those with ILD and RA will find some type of medicine and or doctors who care enough to take time to treat this disease as thoroughly as possible. Good luck to all. May my father finally rest in Peace.

I have been battling interstitial lung disease (ILD) and rheumatoid arthritis (RA) with a little scleroderma on the side. I have tried it all, knowing that the long-term ILD prognosis is not good: death or transplant. I was 35 when my initial RA diagnosis came. I was in "remission" for about 15 years. At 50 all hell broke loose, the lungs being the worst of it all. I have tried it all and am now on prednisone, and cellcept. Who knows what the long-term looks like, but the folks at the University of Cincinnati are convincing. They can slow the progression, and I may see improvement. The bad news is that I have been on the cellcept for about six months and still saw a 4% reduction in co2/o2 conversion. I was down to 50% based on the current damage. The sad part is that there is no cure.