Patient Comments: Interstitial Lung Disease - Describe Your Experience

Please describe your experience with interstitial lung disease.

Comment from: marked, 55-64 Male (Patient) Published: May 10

I've just been diagnosed with "marked ILD, probably chronic." So what's happening here? I just finished running a seven-minute mile and have never had any symptoms. It does not seem that ILD can be diagnosed without symptoms.

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Comment from: Riversedge, 55-64 Female (Caregiver) Published: May 09

My husband, 67, had his physical, a colonoscopy, and a green flag from his cardiologist. He was perfectly healthy on March 16, 2013. Two days later, he suddenly had difficulty breathing. After one week of oral antibiotics and a week of IV antibiotics, he got sicker instead of better. He was admitted and they did biopsies of his lung. Tests determined he had Hamman-Rich syndrome (acute interstitial pneumonia). He never came off the respirator following the biopsy, and died April 16, 2013.

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Comment from: woodslittlesmurf@aol, 65-74 Male (Caregiver) Published: April 23

My husband was diagnosed with pulmonary fibrosis. For years they said he had emphysema. He always had a bad cough. I found another doctor, who ran tests, did a CT scan, and diagnosed this disease. He is now on oxygen. The doctor has told me and I have read that this is a bad disease and it will get worse in the long run. I'd like more information on this disease. I want someone to put up a picture of this disease so that family and caregivers can see what it looks like I'm trying to explain to others, but it is hard – a picture would be well worth it. They have no idea how my husband got it, but if they could have found it to begin with and not have just diagnosed emphysema, they probably could have gotten it under control. Now it is too late. There are pictures of everything else; I think people need to see what we are talking about.

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Comment from: lsal, 55-64 Male (Caregiver) Published: February 19

My brother-in-law died in October 2012 at the age of 57 with interstitial lung disease. He began having trouble catching his breath and would cough a lot. At first they diagnosed him with something else but he just kept getting worse. He was finally sent to Colorado to have a series of tests and they gave him his official diagnosis. He was on oxygen all the time and could hardly walk from the house to the car without sitting down. They could never pinpoint the cause of his ILD but he had a "bug bomb" spray in his face when he was trying to set it in his house. He was in and out of the hospital and was told he might get a lung transplant if he lost 40 pounds. He lost the weight but his health had deteriorated so much he wasn't able to get the transplant. His family was in shock because no one realized just how bad this disease was and how bad he had it.

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Comment from: Cbear, 45-54 (Patient) Published: May 04

My father recently passed away from Interstitial Lung Disease. I always suspected him of having RA but the VA where he received all his medical care never tested or treated him for it. I myself have been diagnosed with RA but stopped taking methotraxate, prednisone, enbral, etc. etc. the enbrel shots only made my immune system weaker and in turn me sicker. My Father suffered tremendously in the end. He was unable to breathe without constant oxygen and in one year deteriorated until his death a few weeks ago. Something really needs to be done about this disease. If RA is one of the leading causes of ILD then doctors should advise patients of the possibility of their future. The VA doctors just pushed my father from one doctor to another none of them wanting to take charge of his illness. Now he is dead. I hope there is hope for me and others with RA. I had no idea until reading up on ILD that RA was one of the causes of the disease. Now I am worried for myself because I do not want my daughter or husband to see me suffer the way my family watched my dad suffer. I hope there is better treatment out there in the future. I hope and pray that all those with ILD and RA will find some type of medicine and or doctors who care enough to take time to treat this disease as thoroughly as possible. Good luck to all. May my father finally rest in Peace.

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Comment from: Annes Hoping, 55-64 Female (Patient) Published: January 07

I have been battling interstitial lung disease (ILD) and rheumatoid arthritis (RA) with a little scleroderma on the side. I have tried it all, knowing that the long-term ILD prognosis is not good: death or transplant. I was 35 when my initial RA diagnosis came. I was in "remission" for about 15 years. At 50 all hell broke loose, the lungs being the worst of it all. I have tried it all and am now on prednisone, and cellcept. Who knows what the long-term looks like, but the folks at the University of Cincinnati are convincing. They can slow the progression, and I may see improvement. The bad news is that I have been on the cellcept for about six months and still saw a 4% reduction in co2/o2 conversion. I was down to 50% based on the current damage. The sad part is that there is no cure.

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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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