Learning that you have a rare lung disease is shocking, confusing, and just plain frightening. Often, people with pulmonary fibrosis see their primary care physician because they are concerned about coughing or shortness of breath. Some learn of the condition as a result of a routine exam or other treatment. You never expect to hear that you have a rare disease that has no known cure at this time. A million questions will pop into your mind. The foremost question is probably “what do I do now?”
Ask a number of people with pulmonary fibrosis and you will get lots of advice about what to do. Here are some of the key things PF Warriors recommend from experience.
Don’t believe everything you read or hear
People who are newly diagnosed often turn to the Web for information. There is a lot of information on the internet and the Web is full of opinions. But not everything you find is accurate. I wish we didn’t have to say it, but don’t believe everything you read out there. You may read or you may even have been told that life expectancy for someone with pulmonary fibrosis is on average 3 to 5 years. Don’t panic. That information doesn’t predict your progress.
Some patients progress quickly, while other progress more slowly. Some types of pulmonary fibrosis may not progress at all. Factors that affect how quickly the condition progresses include: your age, other health factors, lifestyle, how you respond to treatment and your lung condition at the time of diagnosis. No doctor can accurately predict how long you might live. PF Warriors has members who have been living with the disease for 8 years, 10 years, and patients live even longer.
Find an experienced team of PF doctors
Pulmonary fibrosis and many of the diseases that cause it are rare. Primary care physicians may have never had a patient with pulmonary fibrosis. Many healthcare professionals may not have had recent training in its diagnosis, prognosis, or treatments. Look for a specialist with lots of experience in understanding and treating pulmonary fibrosis. It is common for patients to have several healthcare specialists providing care. A key role is often filled by a pulmonologist. Bill Vick, founder of PF Warriors, recommends that you find a center of excellence near you. One reliable resource for locating a center is the Pulmonary Fibrosis Foundation’s Care Center Network list, found at https://www.pulmonaryfibrosis.org/docs/default-source/medical/care-center-network/full-list-of-ccn-sites.-.pdf
Buy a pulse oximeter
Because your condition affects your lungs, you want to monitor how well your lungs are working between doctor visits. It is easy to regularly check your oxygen saturation, that is the amount of oxygen carried in your blood cells. It is a vital measure of good health.
A normal reading is between 95 and 100%. It is common for patients with pulmonary fibrosis to experience lower readings, especially when you are exercising or exerting yourself. But your oxygen saturation may go down even while you are just sitting still.
The device used to measure oxygen saturation is called a pulse oximeter. They are available at pharmacies and box stores like Wal-Mart or Target for less than $50 USD. Using an oximeter is as easy as taking your temperature. Clip the pocket-sized device onto your finger and in a few seconds you have a reading. You can do this easily at home every day or even several times a day. Having knowledge is power. You will learn when you need to stop and recover using breathing exercises or supplemental oxygen.
Learn about your disease and treatment options
The group of diseases known collectively as interstitial lung disease is comprised of about 200 different diseases. Understanding your disease will help you evaluate treatment and medications. You will learn what to expect and how to handle irritants, complications, and other conditions that might accompany your specific disease. Many patients find that they feel more in control when they understand their disease. Learn as much or as little as you like.
Be sure that you are learning from reputable resources, based on recent medical research. Bill Vick, founder of PF Warriors says, “the more you know, the more you can control, and the more you control, the better your life becomes.”
While there is not currently a cure for pulmonary fibrosis, there are treatments that can slow its progress and improve the quality of your life. Begin asking your healthcare team what your options are. Typical options include supplemental oxygen, breathing exercises and pulmonary rehabilitation.
The FDA has now approved two medications that slow the progression of scarring in the lungs. There are clinical research programs going on constantly, which you may participate in. For some patients who qualify, lung transplantation may be an option. Medical advances occur more quickly than ever.
Find a support group
You are not alone. Patients who are newly diagnosed are keen to know if their experience is the same as others. It is reassuring to know that what you are experiencing, whether it is emotional or physical, is normal for people with your condition.
There is a normal emotional reaction to the diagnosis of pulmonary fibrosis. Talking to someone who understands your reaction is reassuring. Hearing from others who have found ways to handle issues that you are facing is heartening. Hearing from people who are living well is cheering and uplifting.
A support group can give you valuable information. Some PF Warriors members say they learn things from a support group that their doctor doesn’t tell them. You will learn practical tips for handling common scenarios, such as nagging cough, too much phlegm, medication side effects, and treatment alternatives.
You are welcome to join PF Warriors. Or find a local group or a group that suits you and get support and information from others. Support will improve your health and your well-being.
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