Patient Comments: Interstitial Lung Disease - Describe Your Experience

Please describe your experience with interstitial lung disease.

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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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: TracyRN, 35-44 Female (Patient) Published: February 13

I am a 37 year old female, I was diagnosed with primary pulmonary hypertension in Feb 2006. I have been managing it with Flolan, Revatio & Letairis. Then came the Graves Disease and my thyroid medications was helping and I was able to get it under control. Then WHAM January 31 2012 I get the happy news that now I have ILD!!! What the heck. I have now started Cellcept & Bactrium. Then I read that it could get worse because if you have an underlying issues of RA, well goodness that is one of the underlying possible cause they think may contributed to the PAH. And now I get to be treated for Hypothyroidism, yes my body went through another thyroid storm and reversed to under production of thyroid. Somebody really needs to find a cure. I have 2 different lung diseases and am on continuous oxygen with chronic pain.

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Comment from: redhead, 55-64 Female (Patient) Published: November 08

I am a 61 year old woman who was diagnosed with interstitial lung disease in 2006. I actually got sick in 2004, but they couldn't agree on a diagnosis. They called it ARDS and hypersensitivity pneumonitis to name just two. Now it is 2011. I have had repeated flare ups of this disease. Now I'm on oxygen 24/7 and taking immune suppressant drugs. The doctor may put me on prednisone which I hate because of all the side effects. We have discussed a lung transplant, but I don't know if it is worth going through so much agony to maybe live and extra year or two. I can handle how I am right now. I feel pretty normal except for the fact that I can't breathe well enough on my own. I use 4 liters of oxygen which is the only appearance that something is wrong with me. I am at a cross roads looking for answers. I see my lung disease doctor in two weeks and will discuss further the possibility of a transplant. Right now, I'm just not sure I'm ready to do that.

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Comment from: 45-54 Male (Patient) Published: August 29

I went in for a biopsy in March 2011 and discovered that I have a condition called BOOP. I left the hospital on pretizone and continued to improve until early August 2011 (heat conditions in North Texas were terrible with over 60 days over 100 degrees), in this time we were lowering meds. Back in the hospital by mid-August where the docs did an Open Lung Biopsy. In this biopsy they discovered I also have Interstitial Lung Disease. I am just learning about the disease and wondering how it is going to impact me at 54 years old. I pray each day for a full recovery knowing that the current damage to the lower portions of my lungs cannot be repaired.

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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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