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Breathing Lessons
By Dorsetta Hale

After being on a waiting list, I was lucky enough to be one of 300 people selected to attend the annual “Understanding Pulmonary Fibrosis: A Seminar for Patients, Caregivers and Families.” It was a free educational event presented by leading experts from Stanford School of Medicine, UCSF and UC Davis Medical Centers. Exhibitor booths offered useful resources on living well with Interstitial Lung Disease along with free gifts from vendors. Each table in the ballroom (yes, it was a catered affair) had a centerpiece with assorted cough drops and a crystal pitcher of water filled with sliced lemons. It was the perfect welcome for anyone living with a chronic lung condition.
I learned something new from the very first speaker. The longest word in the English language is a pulmonary disease, Pneumonoultramicroscopicsilicovolcanoconiosis, caused by volcanic dust. The good thing about that disease is that unlike many other pulmonary diseases, its cause is known. Plus, the word is 45 letters and counts for 68 points in a game of Scrabble.
I’m not only a student. I’m a patient. For me, it all started two years ago following a trip back east. I came down with a cough that I couldn’t shake. I began to have shortness of breath with the least bit of exercise. Soon afterward I developed bumps on the back of my hand that looked like water bumps Westerners get from heat when they visit southern states in the summer. My dermatologist, who knows my skin better than I do, suspected right away that it was Sarcoidosis, something I’d never heard of. I went home and got busy on the computer researching medical websites. I’m learning all I can and have my own team of specialists who have each taken a personal interest in my care. My case is a puzzle they each want to solve which is more than all right by me.
The doctors hit all the right notes when they spoke about how when a loved one has symptoms it effects the whole family. Some folks can take it, some can’t. In sickness and in health, every year of life brings change. In the words of Bette Davis, “Old age is no place for sissies.” Having an uncontrollable coughing jag every morning seemed like nothing to me as I looked around the room at others with similar symptoms, many were on oxygen tanks. Namely, the white-haired couple at the table next to mine. The wife had to get up quite a few times before each break and upon her return her husband held fast to her, stroking her shoulders with each cough and breath she took.
The experts went on to discuss advances in state of the art clinical testing and research, lung transplantation, weight loss and gain, caregiver support, and meditation. I am well versed in the subjects of anxiety, relaxation and depression. I learned about breaking the anxiety-breathlessness cycle from my former training as a 911 Dispatcher. As suggested by the experts, I listen to music, maintain positive thinking, and laugh whenever I can, not only because it releases endorphins and serotonin, but because it feels good. And I’m not ashamed to admit I read the funnies in the newspaper every day and live for episodes of 30 Rock and The Office.
Each attendee received informational booklets on various resources and classes in Pursed Lip Breathing, Pulmonary Rehabilitation Exercise Programs and Harmonica Therapy which I’m sure to excel in since my father was almost as gifted as Stevie Wonder at belting out beautiful music with one blow. Per doctor’s orders I’m going to practice all the heavy breathing techniques, which also gives me a good excuse to work on my online dating profile.
Thanks so much to the sponsors who made the event free: Invacare, California Home Medical Equipment, InterMune, Gilead, Genzyme, Apria HealthCare, Coalition for Pulmonary Fibrosis and Celgene, and a special shout out to the Skyline College Respiratory Therapy Student Volunteers. I went home breathless, but in a good way.

 

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