Living Life One Breath at A Time

Posted on Sep 30th 2016 by Christie DeNave

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"I have pulmonary fibrosis.”

I was sitting in my living room when my mother uttered those words to me from hundreds of miles away. I didn’t know what it was, but I knew it didn’t sound good.

I don’t recall exactly what she said after that because I was overwhelmed by a desire to learn everything I could about the disease in that moment. I grabbed a nearby laptop and immediately took to Google. I quickly scanned pages of information that corresponded to what my mother was telling me on the phone, and then I hit a piece of information she had left out: prognosis.

I bit my lip and tried to keep the emotion from showing in my voice as I read, “The median survival of patients with idiopathic pulmonary fibrosis is only 2 to 3 years, yet some patients live much longer.”

That was my introduction into the world of pulmonary fibrosis in August 2015. Since then, I continue to be amazed at the lack of knowledge, funding and research of this disease that kills approximately the same number of Americans as breast cancer each year.

So what is pulmonary fibrosis? Essentially, its name says it all.

Pulmonary = Lungs           Fibrosis = Scar Tissue

When you have pulmonary fibrosis, scar tissue builds up in the walls of the air sacs of your lungs. As the amount of scar tissue increases, it becomes increasingly more difficult for your body to absorb oxygen.

Also, pulmonary fibrosis isn’t just one disease. It is a family of more than 200 different lung diseases that all look very much alike. In my mother’s case, she has the most common form, known as idiopathic pulmonary fibrosis, which essentially means doctors are not sure what caused it. 

The median age at the time of diagnosis is 63 years old (my mother was 68), and a recent study estimates IPF affects 1 out of 200 adults over the age of 65. However, IPF has been diagnosed in people from early adulthood into their late 80s.

The most common symptom is shortness of breath, which many older patients, like my mother, dismiss as age or being out of shape. It’s not until the scarring becomes more severe and the breathlessness worsens that they seek medical attention.

Unfortunately, there is no cure for IPF. There are some treatments that may help relieve the symptoms such as medication, oxygen therapy, pulmonary rehabilitation and, for those who qualify, even lung transplantation.

It is important for people living with the disease to work closely with their doctor to find the best treatments to try to preserve their overall health. My mother has tried most of the options available to her. She also regularly sees her pulmonologist, who continues to adjust her treatments based on what helps and how her disease is progressing.

Support groups also can be helpful for those battling IPF. While the Pulmonary Fibrosis Foundation has a list of in-person support groups available, my mother found online support groups beneficial in understanding and living with her disease.

And I’m happy to report that right now my mother is doing just that: living with her disease. Her health has declined over the past year since her diagnosis. She depends on oxygen nearly all the time, and congestion has set into her lungs, which causes her to rely on oral steroids for the rest of her life.

But during the past year, she’s also tried to make the most out of her life by traveling when she’s able to, continuing to volunteer at a nursing home and becoming an advocate for increased awareness and funding for IPF research.

September is Global Pulmonary Fibrosis Awareness Month, and PF warriors, like my mother, and their support teams mobilize to increase awareness of the disease. Awareness is important for any disease, but it’s absolutely critical for a rare disease like pulmonary fibrosis. Every mention moves us one step closer to a patient receiving a timely and accurate diagnosis, finding essential support, being heard by legislators and, ultimately, finding a cure. The Pulmonary Fibrosis Foundation is an excellent source of information for those looking to learn more about the disease.

 

 


Filed under: Mind/Body/Soul  


Christie DeNave

Christie Hyde DeNave is a Senior Media Relations Consultant for Florida Blue devoted to serving Central Florida, Tampa Bay and Southwest Florida. She has worked around the globe with local, national and international media for nearly 20 years representing organizations such as the U.S. Olympic Committee, NASCAR, AAA and the State of Florida. In her free time, you’ll spot Christie cheering on the Clemson Tigers and serving on the Clemson University Alumni Council.

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