Patient Comments: Pulmonary Fibrosis - Treatments

What treatments have been helpful with your pulmonary fibrosis?

Comment from: Fastforwardmd, 65-74 Male (Patient) Published: May 30

I was diagnosed with usual interstitial pneumonia (UIP) 2.5 years ago but was suffering the symptoms for three years before that. My dad had it too but the doctors did not pay attention because he was suffering from throat cancer and he was in his late 80s. The last 13 years of his life I lived with him. Our house was near a creek and therefore there were many run-ins with rats, rat feces and urine. I am personally convinced that it was this contact that caused our pulmonary fibrosis. I am up to 10 liters when I move around on my oxygen concentrator but I can sleep with it set at 7 liters. They say I will probably contract pneumonia and will die from that. I have installed 2 HEPA filters in my apartment and they are keeping me from catching pneumonia. I took prednisone for thirty days and that rid me of my arthritis symptoms but did nothing but make me susceptible to pneumonia. I don"t take any pills now for 2.5 years. I don"t want to be a guinea pig suffering side effects. I have no idea how I am going to die. Aim confined to the apartment and my oxygen concentrator.

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Comment from: DeeDee, 55-64 Female (Patient) Published: January 06

I was diagnosed in 2011 with polymyositis. I also have rheumatoid arthritis and pulmonary fibrosis. I was diagnosed in May of 2013 with the fibrosis. I was put on high doses of prednisone and methotrexate in 2011. In December 2013 I was hospitalized for 11 days with pneumonia. I am now on oxygen 24/7 and the bottom lobes of my lungs are destroyed! I have no idea how long I have to live but I am going for a stem cell procedure. They have had 70-75% success rate! This gives me great hope it will slow the progression!

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Comment from: 45-54 Female (Caregiver) Published: March 27

My grandfather and father passed away from pulmonary fibrosis. My father had a left lung transplant in September of 2007. They tied off his right lung which was only working 30%. After the lung transplant there were many ups and downs. My dad was on oxygen all the time. He would no longer eat because of all the anti-rejection medication so a peg tube was placed, but by that time he already lost 60 pounds. My father then entered the hospital to have his right lung removed as it was filling with fluid. He never came home from the hospital after that was done. Six months later, on March 11, 2009 my father passed away. He was only 54. This disease is horrible and my father fought it since 2005. This is also scary as it runs in my family. My grandfather passed away in 2005 of the same thing. My thoughts are sent to anyone who has to fight this disease. I hope to see a cure before it is my time to go.

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Comment from: rita, 65-74 Female (Caregiver) Published: January 31

I have a friend that her mom went into hospital with pneumonia and they found that she had pulmonary fibrosis. They were 99% sure but did the lung biopsy to confirm, she is still in hospital now on a ventilator. The kidneys are shutting down, not a good outlook. She is not a candidate for lung transplant because she smoked, but before the surgery she said she wanted to live. The doctors said it would have been better to have cancer, at least they could have helped her.

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Comment from: Kiera, 55-64 Female (Patient) Published: November 01

After my 3rd pulmonary embolism in 2003, I was diagnosed with pulmonary fibrosis and I just read that people usually die within 5 years. My specialist has me on blood thinners, prednisone and other steroids that I inhale daily. Somehow, he's managed to keep me alive for 10 years.

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Comment from: Joleneh63, 65-74 Female (Caregiver) Published: November 08

My dad died from Pulmonary Fibrosis as did his mom; my grandma and his sister; my Aunt so of course I was extremely concerned of this being inherited so I did extensive background on where my grandparents lived which was on a huge farm in North Dakota and my dad was the youngest of 6, he was born in 1922. I learned form a Dr. at the University of North Dakota that during the 20's and 30's that a pesticide was used on the crops, it was called Paraquat and this pesticide has now been found to be another known cause of PF with having 3 immediate family members having PF and dying at a relatively young age; my grandma was 76, my Aunt was 68 and my dad was 67. I was relieved to learn that it's not inherited but PF is a horrible painful way to die and watching my dad at my young age of 27 was unbearable!! He died in 1990, I am now 48 years old and there isn't a day that I don't think about him. I wish there would be a cure for this terrible disease because my dad missed out on watching my daughter grow into a very beautiful young women and now a mom of 2, he's missing out on his great grandchildren and he would only be 89! Terrible disease.

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Pulmonary Fibrosis - Experience Question: If known, what was the cause of your pulmonary fibrosis? Please share your experience.
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Pulmonary Fibrosis - Cause Question: If known, what caused your pulmonary fibrosis?

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