Interstitial Lung Disease - Describe Your Experience

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What is interstitial lung disease?

Interstitial lung disease is a term used to refer to a particular type of inflammation of the interstitium of the lungs. The interstitium is the tissue that surrounds and separates the tiny air sacs (alveolae) in the lungs. Interstitial lung disease involves an inflammation of this supportive tissue between the air sacs rather than inflammation in the air sacs themselves. Interstitial inflammation is typically a diffuse process that occurs all over the lungs and is not confined to one location.

Sometimes the term "interstitial pneumonia" is used for certain forms of interstitial lung disease. Technically, however, the term "pneumonia" refers to inflammation of the lung tissue that is usually associated with infection. Because interstitial lung disease has a number of causes (most of which are not related to infection), the term "interstitial pneumonitis" is occasionally used to refer to the inflammation that occurs in the absence of true infection.

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Comment from: klassicant, 55-64 Female (Patient) Published: July 28

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.

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Comment from: tcameron, 45-54 Female (Patient) Published: January 15

I was diagnosed with ILD (interstitial lung disease) in November 13. I have no insurance and am unable to pay to see a specialist. I have very little understanding of this disease and what the future holds for me. I am being treated with prednisone and Spiriva, also 2 other inhalers. I had double lung pneumonia and this is how I was diagnosed through a lung biopsy. However, since my release from the hospital in November I have not had any follow up care except through the free clinic physicians who have very little understanding or knowledge of ILD. The prednisone has caused enormous weight gain, along with other side effects.

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