Patient Comments: Pulmonary Fibrosis - Treatments

What treatments have been helpful with your pulmonary fibrosis?

Comment from: Chill, 35-44 Female (Caregiver) Published: August 20

My mother was diagnosed with pulmonary fibrosis in 2010, was told to quit smoking and she did. October 2014 she had a cough and finally in February 2014 she went to the emergency room when she was coughing up blood. She never told me and kept this a secret for some reason. Mom took leave from work and at home she was already on 5 liters of oxygen. In the hospital she just kept getting worse, she was up to 15 Liters of oxygen. Hospital suggested hospice but I couldn't give up, we had to try rehabilitation. She did rehab and we thought we were making progress but she ended up back at hospital at 15 liters again. While in hospital doctor stated there is nothing more medically they could do for her and it was heartbreaking but we did hospice. She passed away on July 14, 2014. Just a suggestion; if you have this disease please tell your loved ones so they can understand what's going on with your body. This is one of the worse feelings to have my mom pass away and I didn't know from what until it was too late. My heart still aches, I wish I knew this 5 years ago, when she was first diagnosed.

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Comment from: M Kay, 55-64 Female (Patient) Published: July 08

I had necrotizing pneumonia with MRSA, was unable to be ventilated at first, and placed on ECMO (extracorporeal membrane oxygenation) for 5 weeks and only received PEEP (positive end-expiratory pressure) through my trachea. After ECMO my lungs healed enough to be ventilated and I was on the ventilator for 7 more weeks. The only treatment I receive is oxygen at 2 liters. I turned 60 while in the hospital. I was working full time and in good health. Now I am applying for disability due to my shortness of breath not allowing me to continue working.

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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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