Patient Comments: Interstitial Lung Disease - Describe Your Experience

Please describe your experience with interstitial lung disease.

Comment from: prouddaughter, 25-34 Female (Caregiver) Published: March 18

My dad, age 39, died 10 years ago from interstitial fibrosis of the lungs (I was 15). When he was originally diagnosed they gave him 5 years to live....he lived 10 years. The disease progressively gets worse. He did not tell us he was dying and kept it from us. Looking back, we had a dad who was able to play with us outside at the beginning but slowly deteriorated. The last couple years he was not able to walk far without taking a break. He was on oxygen full time and sleeping a lot. He died in the home the day before Father's day and it looked like he just fell asleep and didn't wake up. I remember him saying sometimes it felt like being under water without getting air. People with this disease are strong, brave people. They endure so much more than other people could imagine. I pray for a cure everyday and frequently have dreams of my dad swimming and running without oxygen as I know he is in heaven.

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Comment from: TM, 65-74 Female (Patient) Published: June 30

Long story short - If you are diagnosed with interstitial pneumonitis and are taking a statin (especially Pravastatin) please consult with your doctor. But first go online and find the web site from the Medical Journal of Australia that references a specific, but very rare connection between this cause and effect. It fit my case very precisely and after hospitalization, lung biopsy, etc, I am doing very well OFF the statin and on steroids!!!! Basically, no one knows about this connection, but there are a few documented cases. It was by chance that we made the connection and although the specialists say there isn't a way to prove this is my cause, it ties in perfectly. The fact that I am totally surprising everyone with my recovery says a lot.

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Comment from: lisa, 45-54 Female (Patient) Published: May 18

I have had Stills disease RA since 1996. I have been on plaquenil since 2008 and occasional runs of steroids. In November, a flare-up started and I also had trouble breathing. In end of April I went on Methotrexate but before that I had a PFT done which showed I had 58% lung function. I was started on steroids, steroid MDI's and LABA. I was told I had severe asthma. They are now thinking it may be UIP. The LABA has caused SVT. So we are experimenting with other MDI's. Working with Cardiologist and pulmonologist.

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Comment from: Withheld by request, 55-64 Male (Patient) Published: February 14

I am an otherwise healthy male. I have just recently discovered that I have interstitial lung disease. I worked in a chemical plant in the early 70s. There I was exposed to Diatomatious Earth Dust used for a filter medium, Ammonia, and the ever present leaking Chlorine Bottle. I worked there for over 2 years before deciding that it was not for me. Unfortunately, the damage was done, and now my prospects do look rather grim. I have been given only about 5 years.

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Comment from: lue, 55-64 Female (Patient) Published: August 09

I have this but my insurance does not cover the meds for me. I do have home oxygen and I am grateful for that. It is defiantly getting worse and it feels like there are bricks on my chest so I can't breathe in. I have been on oxygen 2 1/2 years.

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Comment from: jdosco, 19-24 Male (Caregiver) Published: June 07

My 24 year old brother died if this disease. He had Hodgkin's lymphoma, which has about a 90% survival rate. As a result of his chemo meds and radiation therapy damaging his lungs he had to have ventilation and never got out of the ICU.

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Comment from: jeanette, 0-2 Female (Caregiver) Published: May 21

A friend's young baby has just been diagnosed with this and is desperate for help as it is all so vague. A biopsy is being done and there is talk of him being put into a bubble. I am trying to find out any ways of supporting them with information which is positive.

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Comment from: Canadian mom, 55-64 Female (Patient) Published: March 02

I discovered I had this disease in Jan. 2004 brought into the hospital Emergency. In the hospital for 3 weeks, released, put on prednisone, feeling better after a year, went back to work, about a year later, I felt the symptoms returning. I was still on low doses of prednisone so the doctors just monitored me. In Jan 2009 I felt much better and told the doctor I wanted to go off prednisone, (in hindsight, probably something I shouldn't have done) because now, a year later the shortness of breath is back, tiredness, weight loss, and the coughing . Which never did leave entirely. Seeing a new specialist now, he is not offering me much hope, he said a lung transplant may help, but I am really scared and never expected this to happen again, and so soon.

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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?

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