My mom died from idiopathic pulmonary fibrosis (IPF) at the age of 89. She had rheumatoid arthritis in her fingers and toes. She was very healthy otherwise, even if she was 65! She said she got it from sleeping near a vent on a cruise ship which she complained for years before her diagnosis. A co-worker got IPF and had a lung transplant at age 36, 5 years ago. He was very fit for his age, but this operation almost did him in. After 5 years he looks and feels better but is still way below par. Think long and hard before you get this operation. His deciding factor to do it was he did not want to see his two little girls grow up without a dad. Neither my mom nor my friend smoked, used drugs of any kind, or otherwise abused their bodies. The same for me, but now I have been diagnosed with IPF as well. I am 66 and was in excellent physical condition my whole life. I was working out 6 hours a week until about 5 years ago. I never felt better. Then I started losing my edge and found it to be very hard to do my workouts. Finally I had to get my lungs checked. You know the rest. I was exposed to mold (alternaria) for 2-3 years and am mostly convinced that is the cause (also called wood workers disease and a recognized cause of PF), but all my doctors say no. Everything was progressing slowly, then in one day my breathing with exercise turned so bad I could barely get out of bed without gasping for breath. My doctors are skeptical about all this, but the comparative x-rays and CT scans back me up somewhat they were 2 months apart, so the doctors are beginning to believe me. My oxygen saturation dropped from 94 to 87. I developed tachycardia (65 jumped to 85) several months ago, but the doctors say to keep working out until I need to take a break. The hardest part is my family and friends they all will be hurt by this. The second hardest part is not being able to hike and dive like I used to. I just retired and can't play golf. All my plans for an active, happy retirement IPF can and does deteriorate very fast. Get all the treatment and experimental drugs going when this disease is first diagnosed. Time is vital some drugs may block the progression of the disease. Published: August 18 ::

I'm 39 and have had poliomyelitis and rheumatoid arthritis since I was 16. It's been in remission for the last 18 years, but I was recently diagnosed with non-specific interstitial pneumonitis. This landed me back on prednisone, which sucks. I've been lucky enough to be surrounded by an awesome group of friends, family, co-workers, and medical staff to support my ups and downs. I happen to be a pharmacist, which sort of helps me understand this whole process a bit better, but understanding it does not always make it easier to accept. Ask as many questions and talk to as many people as you can. I've only just started on this journey and I pray every day that I can remain as normal as possible for as long as possible. Well, as normal as you can be on prednisone. Published: July 28 ::

I had been diagnosed a year ago with the interstitial lung disease and I am now having a lot of difficulty breathing this past year. I was told to try seldenifil 25 mg a day, but I didn't notice a marked improvement. I stopped taking it for about two months and my breathing difficulties became harsher. I a have resumed taking it again. Hopefully it will help. My acid reflux disease is also making the matter worse. I have a continuing irritation on my throat and breathing is becoming terrible. It's like having an asthma attack with emphysema everyday. I still work, but I am not sure how long I will last. Working is becoming difficult everyday. Of course I need to work. Is there any light in the tunnel for this dreadful disease? Hopefully you'll publish updates about the disease. Published: July 28 ::

My mother recently died from interstitial lung disease (ILD) complications. The initial diagnosis was a surprise. But after reading about ILD, I am sure she had it for at least three years. I don't know why a CT scan wasn't done earlier. She had a history of bronchitis and pneumonia along with a chronic case of rheumatoid arthritis (RA). Her symptoms were typical: weakness, shortness of breath, and coughing. She was on methotrexate for more than 10 years. I urge anyone who has experienced these symptoms and complications to question your doctor about ILD. It was too late for my dear mom. Published: June 22 ::

I have been told that I have interstitial fibrosis. I am 44 years old with three kids and my first grandson. I have lost my job and my insurance I am a single parent. I am detoxing my self with acai berry juice. My friends and family give me support. I am not ready to die. I have been trying to get into a research center hopefully one will come along. My advice to anyone with this, “don’t give up.” I want to be at all my grandson games he has in his future. Published: November 09 ::

Just over a year ago, my wife was diagnosed with Interstitial Lung Disease, and the decline in her health, and stamina is remarkable. She is 62 years old, and has always been very active, and social as a minister's wife. This disease has almost stopped her completely. Both lower lobes of her lungs have become fibrotic, and she has regular coughing bouts that has caused acid reflux problems. The future does not seem too bright for my beautiful, precious wife. Published: August 21 ::