Patient Comments: Interstitial Lung Disease - Describe Your Experience

Please describe your experience with interstitial lung disease.

Comment from: RetiredGeezer, 65-74 Male (Patient) Published: August 18

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.

Was this comment helpful?Yes
Comment from: cd123, 35-44 Female (Patient) Published: July 28

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.

Was this comment helpful?Yes
Comment from: elvie, 55-64 Female (Patient) 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.

Was this comment helpful?Yes
Comment from: phyllis, 75 or over Female (Caregiver) Published: June 22

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.

Was this comment helpful?Yes
Comment from: lysabee, 35-44 Female (Patient) Published: February 04

I have stage IV adenocarcinoma. Other than cancer, I am active and healthy. I have recently developed a dry cough and occasional shortness of breath. I also recently began taking a trial drug that may possibly cause insterstitial pneumonitis. I am having a CT tomorrow to determine if that is the case. If so, I will have to stop the trial drug. My oxygen levels are normal as is my heart rate, so I am hoping it is just a lingering cold.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Interstitial Lung Disease - Causes Question: What was the cause of your interstitial lung disease?
Interstitial Lung Disease - Symptoms Question: What were the symptoms of interstitial lung disease experienced by you or someone you know?
Interstitial Lung Disease - Treatments Question: What forms of treatment have you or a relative had for interstitial lung disease?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.