Patient Comments: Interstitial Lung Disease - Describe Your Experience

Please describe your experience with interstitial lung disease.

Comment from: Mommy Jess, 19-24 Female (Caregiver) Published: January 08

Today we finally found out what my dad has been fighting for the past year. Usual Interstitial Pneumonia. Just 6 months ago he fought kidney cancer. I feel very sad to think of his odds of living but now more than ever I must be a strong daughter. I'm searching for the best treatment for him. He has trouble breathing, has scarring in his lungs, weakness. Life is always throwing curve balls.

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Comment from: Alexgirl, 45-54 Female (Patient) Published: November 28

I was diagnosed in June 2011 with Dermatomyositis, Anti Jo 1 Synthetase Syndrome, Vasculitis and ILD. I spent 9 months in the hospital and 1 month in ICU on Bipap. I came home with oxygen starting at 4 LPM and now have reduced it to no oxygen on rest or at sleep, 2-3 walking distances over 50 metres and 2-4 for household chores. I am hoping one day to not need the oxygen and realize I have to exercise which is hard because my autoimmune diseases make me very tired. I do get little infections where I have a cough for a week or two which are very easy to pick up. I currently have chest pain on my right side when I inhale or cough but I'm not sure if it is from my back or another infection. I did survive when there was little hope and hope that these diseases do not get worse but go into remission.

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Comment from: emma, 75 or over Female (Caregiver) Published: October 27

My grandmother died of pulmonary fibrosis in 2006 at the age of 76. She was diagnosed a year and half before she died. She used to be very healthy for a woman at that age, so it took us and her a long while to accept the diagnosis, and even longer to came to realize that it was a progressive and debilitating disease with no cure. Every day she got sicker and sicker, struggling with shortness of breath, dry cough, and occasional chest pain. The doctor said the cause for her condition was unknown, which made it harder to process the reality of her disease. She had been a healthy woman; her diet and lifestyle was textbook healthy. She had been responsible for her body and all of a sudden, she was handed over a death sentence. My grandmother was a very stubborn woman who took pride in her health, so at the beginning she tried to refuse oxygen as much as she could, until she was heaving and fighting for air as if she was drowning. She took corticosteroids, but that gave no relief whatsoever. In the last few days of her life, she begged us to pull off the oxygen and let her die. It was so unbearable; lung cancer could have been easier for her, I guess. I wish there could be a cure soon, or at least some explanation as to the exact cause of the disease. No human being should ever be brought to go through or even witness such pains and helplessness.

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Comment from: worried mom, 19-24 Female (Caregiver) Published: September 08

My 22 year old daughter has been diagnosed with interstitial lung disease and emphysema. This girl is in the military and had breathing problems but was told to "run it off." She was in the hospital for two weeks, had several ct scans, bronchoscopy tests, and finally an open lung biopsy to get the final diagnosis. We think this developed after her experience with the gas chamber during basic training. What kind of life can she expect to have?

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Comment from: worriedbody, 45-54 Male (Patient) Published: June 09

With interstitial lung disease, I had shortness of breath doing small tasks such as taking garbage out!

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Comment from: (Caregiver) Published: July 28

My mother-in-law died of ILD when she was 70. Her younger brother died of the same as well as a younger sister. Although my mother-in-law got it first, her brother died before she did. Her younger sister died when she was roughly 75. This week, we will bury her brother's son who got it in his early 40's. He tried the transplant route but it failed. He is the fourth family member we have lost in approximately 10 years to ILD. It is very rare to see it in more than one family member. A positive attitude really helps with this disease. My mother-in-law did not slow down too much until the very end.

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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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