Anyone have pulmonary fibrosis?

I was diagnosed with this five years ago. At the time the doctor told me I would never get better and that my life expectancy would probably be about 10 years. I've taken Cytoxan and Imuran for it and I'm on 3 liters of O2. Since I started losing weight I feel better and have more energy. My last tests showed marked improvement. Have you or anyone you know actually overcome it, or is the doctor right about the prognosis?

Hi,
I am almost 80. 4 1/2 years ago I was diagnosed with PF. I was told that depending on what sort, I would have as little as 4 months or up to 4 years to live. I have had periodic tests to determine how much oxygen I get. It has been consistantly around 60%. I do not take anything for this decease.
About 4 months ago my internist suggested that I see a lung specialist since it appeared that I was loosing ground. The lung guy had me take a Cat Scan and then wanted me to have a biopsy where a chunk of my lung would be taken; I'd be in the hospital for 3 to 5 days and need to take it easy for 3 to 5 weeks. If it was determined that progression was speeding up, nothing would be prescribed. Longer term, drugs that would remove my hair and destroy some bone marrow. I declined.
I exercise regularly, eat whatever I want, take vitamins and minerals and drink alcohal in moderation.
I gave up smoking over 30 years ago and never did smoke cigarettes. Did spend 3 years in the navy and was aboard ships in WWII and Korea; they had asbestos material in them.
I don't feel badly. Was told that I would end up taking oxygen but so far have found not need for it. I live in a house with two levels and generally go up and down stairs several times a day.
I cut grass with a push mower and a riding mower.
I have been married for over 50 years and to my knowledge, no one else in my family has had this decease.
I believe in never giving up and so should you.
Good luck. Archie B

I don't have pulmonary fibrosis, but my daughter does have a type of interstitial lung disease with some fibrosis. Not all the rules are the same in kids as they are in adults, and I'm in no way an expert on the matter. But I believe the possibility for improvement depends a lot on the specific type you have. I don't think you can really get rid of the fibrosis you already have, but you can stabilize (stop getting more damage), and lung function can improve with treatment. Treatment made a huge difference for my little girl, and if it weren't for the oxygen she wears and the fast breathing, you'd never know she was sick now by looking at her. I wish you the best!

Because a healthy lifestyle may help slow disease progression, patients WITH PULMONARY FIBROSIS
should be encouraged to stop smoking, eat small and well-balanced meals, get adequate rest, and participate in an exercise regimen. They should enroll in a pulmonary physical rehabilitation program, if possible, and join a support group if one is available. Caregivers should also be encouraged to join a support group and/or to find other ways to help alleviate stress (e.g., exercise and relaxation techniques). ?.


No known cure exists for idiopathic pulmonary fibrosis. Medications such as corticosteroids and cytotoxic drugs may be given to suppress inflammation, but these treatments are usually unsuccessful. Oxygen is given to patients who have low blood oxygen levels.

Recently, interferon-gamma-1B has shown some promise in treating this disease, but more research is necessary to demonstrate that this drug is beneficial.

Lung transplantation may be indicated for some patients with advanced pulmonary fibrosis.

pulmonary fibrosis is incurable, but the doctor cannot really tell how long you will live. there was a joke about doctors and God -- what is the difference between God and a doctor?
God doesn't think he's a doctor, while doctors think they're God.

just to cheer you up... don't feel bad if a doctor tells you that you have 10 years to live -- that is not 100% reliable, and that is only based on studies that's why they know the approximity of the life expectancy. but do believe that there are miracles. your condition may not be cured, but you could live longer -- just take good care of yourself and get educated about your disease -- it will help you understand it more.

No. but I do have Cystic Fibrosis. It also affects the lungs. When I was diagnosed they said I would most likely not live past the age of 13. (I was 5 years old). I do my breathing treatments and take my medications and have lived to the age of 48. I was told that if I kept my weight up to normal my lung function would be better. I gained 10 pounds and my lung function went up, just like the doctor said it would. Eat right, be compliant with your treatment plan and you might live well beyond expectations!

Because pulmonary fibrosis is thought to be a autoimmune disease it is possible that with healthy living that you have stopped its progress. There are additional steps that may work too but that would require consultation.