Best of Care
The Pulmonary Fibrosis Foundation (PFF) has added 15 treatment sites to its nation- wide Care Center Network – centers with recognized expertise in diagnosing and treat- ing people with pulmonary fibrosis. These sites raise the total to 60 such centers in the United States. Care centers use a multidisci- plinary approach to PF care. Experts in pul- monary medicine, rheumatology, radiology, pathology, and nursing specializing in inter- stitial lung disease comprise the care team at each recognized center. They also assist with continuing care, help in obtaining social ser- vices, joining support groups (including one for caregivers) and in possibly participating in clinical trials and research studies.
The 15 centers are located at:
- Banner University Medical Center, Phoenix, AZ
- Baylor University Medical Center, Dallas, TX
- Cleveland Clinic, Cleveland, OH
- Cleveland Clinic Florida, Weston, FL
- Henry Ford Hospital, Detroit, MI
- Houston Methodist Hospital, Houston, TX
- LeBauer Health Care at Cone Health, Greensboro, NC
- Loyola University Medical Center, Maywood, IL
- Spectrum Health System, Grand Rapids, MI
- Luke’s Hospital, Chesterfield, MO
- UC Davis Interstitial Lung Disease Program, Sacramento, CA
- University of Colorado Anschutz Medical Campus, Aurora, CO
- University of Florida, Gainesville, FL
- University of Iowa, Iowa City, IA
- University of Wisconsin, Madison, WI
Clinical Trial News
An investigative drug developed by Kadmon called KD025 was shown to be safe and effective to prevent lung function decline in patients with idiopathic pulmonary fibro- sis (IPF). The ongoing trial (NCT02688647) is expected to include about 36 people with IPF who have previously been treated with Esbriet (pirfenidone) or Ofev (nin- tedanib), or both. Data collected after 24 weeks showed that the investigational drug could effectively improve lung function and prevent IPF progression. In general, it was well-tolerated, with no serious drug-related adverse events reported.
The rate of decline in lung function in people with IPF before they are treated with Genentech’s Esbriet (pirfenidone) influences the effects of the medication, research- ers have found. Those classified as rapid progressors, who experience accelerated declines in lung function, benefited more from Esbriet than those considered slow pro- gressors. The study was published recently in the journal Scientific Reports.
A blog on www.pulmonaryfibrosisnews. com posed the questions, “Why am I having so much trouble thinking clearly? Is it from pulmonary fibrosis?”
They asked Dr. Noah Greenspan, Direc- tor of the Pulmonary Wellness and Reha- bilitation Center in New York to comment. He said that many factors may contribute to why we have trouble thinking clearly, and although it can be tempting to attribute all of our struggles to pulmonary fibrosis, the disease is not always the culprit. Possible explanations include:
Chronic hypoxia: Hypoxia is a fancy way of saying you aren’t getting enough oxygen to your brain and other organs. It is possible that chronically having less than 90 percent oxygen saturation could cause changes in your brain, which could cause you to think less clearly.
Decreased blood flow: This can be related to atherosclerosis (plaque in the arteries), particularly in the carotid arteries that supply blood to the brain. It could also be related to changes in the vessels of the brain itself. This is more common as we age and can cause subtle changes in your thinking and in your brain’s abilities.
Emotional stress: We may not realize the long-term emotional effects that dealing with a chronic illness can have on us. We are constantly forced to wrestle with our mor- tality and the grief that it entails. We also experience stress because of lifestyle changes, the effect that our illness has on others, and the everyday stress of making sure you can breathe – not to mention the frequent clinic visits, medical exams, and procedures. It is common to experience anxiety, depression, and difficulty thinking clearly when dealing with so much physical and emotional stress.
Something else: Our bodies are incredibly amazing and incredibly complicated. There could be many other reasons.
There are lots of ways to care for your body and manage your stress:
Oxygen levels: It is important to keep your oxygen saturation at a safe level – Dr. Greenspan recommends above 93 percent.
Blood pressure management: If your blood pressure is too high, your heart is working too hard to pump blood to the rest of your body. Pulmonary fibrosis as a disease puts extra pressure on our hearts. Ask your primary care doctor or cardiologist for help to manage your blood pressure.
Practice relaxation techniques: Our bodies need a way to relax from the constant stress we are under. Stress relaxation techniques, as well as tai chi and Qigong, are very helpful.