Patient Comments: Interstitial Lung Disease - Describe Your Experience

Please describe your experience with interstitial lung disease.

Comment from: 65-74 Female (Caregiver) Published: December 31

My mother is presently dying of this disease. She is 76 years old and we put her in the hospital with pneumonia on December 14th, 2009. Today, 12/30/09 it has been determined that we need to take her off the ventilator and release her spirit cause she is not coming back to us in bodily form. Her lungs have just given out. In retrospect, we can see the signs on the wall. She was short of breath, but we thought she was just out of shape. We didn't even realize that she lost 30 pounds in the last 16 months. She fought this disease on her own even though she didn't know she was fighting it. She was strong till the end...loving us all so much. We will know how to recognize it in the future, but according to today's research, there is still no cure. Mother lived the last few years of her life as she would have wanted to...with us, but a bit short of breath, but still with us. We love you Nana.

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Comment from: plantcitydee, 35-44 Female (Patient) Published: November 09

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.

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Comment from: Timothy, 55-64 Female (Caregiver) Published: August 21

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.

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Comment from: Gloria, 45-54 Female (Patient) Published: August 21

I have had interstitial lung disease for 3 years. It has gotten worse. I also have Lupus, arthritis, and I am a diabetic. I am on different kind of medication especially prednisone. There is nothing they can do. My breathing is very bad. Sometimes I think I'm not going to make it.

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Comment from: The Mamma, 35-44 Female (Patient) Published: June 08

I wish I understood Interstitial Lung Disease better. I was diagnosed in May and thought it was better after leaving the hospital, but the pain is back. I had pneumonia in March, have never been a smoker and was treated with morphine, Celebrex and Levaquin in the hospital and following to clear it up.

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Comment from: Heavenly father, 19-24 Female (Patient) Published: June 08

My best friend has this disease she is 23 years old and had a lung transplant. Doctors say there is nothing left to do for her. The transplant did not work for her.

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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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