Maryland Women's Heritage Center

The Thief That Steals Your Breath: Idiopathic Pulmonary Fibrosis

"Dear God! Help him!" I exclaimed. "My husband's collapsed and he's not breathing! Please hurry!" My frantic 911 call at 3:30 am on a Monday in April 2005 was the beginning of our journey into the depths of devastation caused by a lung disease doctors referred to as Familial IPF.

We were confused, scared, and had little knowledge of what to expect. In this article, I will share helpful information about dealing with this disease.

What is Familial Idiopathic Pulmonary Fibrosis or IPF? IPF is a rare, serious lung disease causing irreversible scarring of the lung tissue. It prevents the lungs from expanding to receive air during the breathing process. 'Idiopathic' means that the cause of this disease is unknown.

The term 'familial' means there is confirmed evidence of IPF in at least two or more family members. Currently, no test, scan, or blood work can determine whether a person will inherit IPF or has a greater tendency of developing the disease. The number of people in the United States affected by IPF is estimated at 132,000. This number varies annually. There is no cure for IPF and the disease progressively worsens. Eventually, a lung transplant will be the only option for a chance of survival.

Diagnosing IPF can be a long, difficult process. In its beginning stages, it resembles other restrictive lung diseases such as COPD, asthma, or tissue damage due to aging. Some studies show more than 50% of IPF cases are misdiagnosed. On average, patients experience symptoms for up to two years before an IPF diagnosis.

Once a diagnosis of IPF is given, what should you do? See a pulmonary specialist with experience dealing with IPF immediately! Primary care physicians can provide specialist referrals.

If you have medical insurance, call your insurance provider to find out if IPF is a covered disease, what benefits and/or costs you are responsible for, and a list of approved lung transplant doctors and facilities. Finding that a doctor or hospital is not a preferred provider after you have received treatment could result in expensive out of network charges. After the initial diagnosis, an evaluation will be done based on results from pulmonary function tests, CT and MRI scans among others. You and your doctor will develop a plan to help slow the progression of the disease including discussing medications, pulmonary rehabilitation and changes in daily habits.

Familial IPF can be an overwhelming and isolating disease. But you're not alone! IPF support communities are wonderful resources for families dealing with this diagnosis. These groups can include transplant recipients, patients on the transplant waiting list, social workers and grieving family members.

There is hope for IPF patients through lung transplants. However, a lack of organ donors continues to cause death in patients who are on the transplant waiting list. Please consider giving the gift of life. Become an organ donor. There may come a time when someone's gift saves yours or a loved one's life.

Laura Hern

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