Approx. 5 yrs ago when i obtained a copy of my medical records from my former Doc's office; a diagnosis of mine was "pulmonary fibrosis". My name was not on that specific page–where the typist had typed the Doc's dictation, apparently. But my Doc or nobody ever told me that I had the pulmonary fibrosis. — later i mentioned it to one of the Doc's & they stated: "Just not worry about it". My oxygen level, a few yrs ago was 10 below normal; now it's 90 to 95 percent, therefore 5 to 10 below normal. I'm a smoker. I read in my medical book that p.f. is a fatal disease. I used an inhaler infrequently a few yrs ago – for diagnosis of asthma. I've used no inhaler in 2 or 3 yrs, but almost need to–sometimes, so I keep one (a prescribed inhaler–prescription) on hand for emergencies. I smoke 1 pk cig per da.; 3 yr. ago Dr say my breathing-out capacity was 50percent of other ladies my age.

What is Pulmonary Fibrosis?
Pulmonary Fibrosis involves scarring of the lung. Gradually, the air sacs of the lungs become replaced by fibrotic tissue. when the scar forms, the tissue becomes thicker causing an irreversible loss of the tissue’s ability to transfer oxygen into the bloodstream.

What are the symptoms?

Shortness of breath, particularly with exertion

Chronic dry, hacking cough

Fatigue and weakness

Discomfort in the chest

Loss of appetite

Rapid weight loss

What is the prevalence of Pulmonary Fibrosis?

There are five million people worldwide that are affected by this disease. in the United States there are over 200,000 patients with Pulmonary Fibrosis. As a consequence of misdiagnosis the actual numbers may be significantly higher. of these more than 40,000 expire annually. this is the same as die from Breast Cancer. Typically, patients are in their forties and fifties when diagnosed. However, diagnoses have ranged from age seven to the eighties. Current research indicates that many infants are afflicted by Pediatric Interstitial Lung Disease. At this time there is limited data on prevalence for this group.

What are the causes?

Traditional theories have postulated that it might be an autoimmune disorder, or the after effects of an infection, viral in nature. There is a growing body of evidence which points to a genetic predisposition. a mutation in the SP-C protein has been found to exist in families with a history of Pulmonary Fibrosis. The most current thinking is that the fibrotic process is a reaction to microscopic injury to the lung. While the exact cause remains unknown, associations have been made with the following:

Inhaled environmental and occupational pollutants

Cigarette smoking

Diseases such as Scleroderma, Rheumatoid Arthritis, Lupus and Sarcoidosis

Certain medications

Therapeutic radiation

How is it treated?

There are currently no effective treatments or a cure for Pulmonary Fibrosis. The pharmacological agents designed to treat lung scarring are still in the experimental phase while the treatments intended to suppress inflammation have only limited success in reducing the fibrotic progress.

Because the origin and development of the disease is not completely understood, misdiagnosis is common. Varying terminology and lack of standard diagnostic criteria have complicated the gathering of accurate statistics about people with pulmonary fibrosis. Supplemental oxygen improves the quality of life and exercise capacity. Single lung transplant may be considered for some patients. Pulmonary Fibrosis is a very complex disease and the prediction of longevity of patients after diagnosis vary greatly.

Well now that you know what PF is, here is how to not actively make it any worse. first of all, STOP SMOKING, if you dont know by now, IT WILL KILL YOU. Inevitably, you will get COPD, ie., emphysema, or lung cancer and die. all of that is on top of the diagnosis of PF. So just buck up and stop smoking.

To address your "oxygen level," it is actually termed Sp02 or Pulse Oximeter reading, and for a female smoker, age >50, 90-95% is very good. That is not your biggest worry.

To address your "breathing out capacity," I am assuming that your doctor sent you to a pulmonary function testing lab, or PFT Lab, and that your FEV1 is decreased. this means that in 1 second you force out 50% less air then other women of your height, size and history. this is expected to be decreased in a person with PF and a person with a smoking history, but by combining the 2, you are just making matters worse. if he didn't send you to the PFT Lab, then you did a Peak Flow Measurement, and after forcing a large breath out you achieved a low number, like <200 or even 250. even with this piece of information, your outlook looks grim. Stop smoking, or you will slowly suffocate to death. and yes, I am trying to scare the SH*T out of you.

This is a fancy word for scarring. old TB, old fungus infections, old organized pneumonia can all cause areas of fibrosis. far worse would have been a diagnosis of COPD and emphysema.

have you been exposed to any extreme heat (like fire or smoke inhalation)? because one of the things which you can get pulmonary fibrosis is if your lung has been injured… scar tissues form to repair the injured tissues, scar tissues are stiffer therefore the most common problem among pulmonary fibrosis patients is the inability to breathe efficiently (or take a deep breath) it's considered a restrictive disease. most likely permanent, but there are therapeutic ways that you can do to work around it and make everything easier.

expect to see your oxygen saturation to go down because of your lung problem, but i wouldn't see any accute symptoms though.

my concern is that your doctor didn't tell you that you have pulmonary fibrosis. it's either, a.) you don't have it, B.) they are not 100% sure yet or C.) they're stupid.

a doctor should never hide anything from the patient. it's a code. if a patient has a terminal disease, then the patient deserves to know about it. i suggest that you seek second opinion and have tested again if you really have pulmonary fibrosis.

the only way to determine what your lung problem really is, is to have pulmonary function tests done. this will determine what specifically your condition is.