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DEFEAT CF

one family's decision to choose hope over despair

View the 2017 Newsletter

Germ Warfare

Following her diagnosis with cystic fibrosis (CF) at age 2, Paige was immediately hospitalized for 8 days. During our hospital stay, I remember a physician warning me, “If you want your daughter to grow old, keep her away from viruses.” This advice sent me into a tailspin! Was he telling me that the length of Paige’s life was my responsibility? If so, should I let her continue to go to daycare? Should I allow her to touch shopping carts in stores? Should she be allowed to play with friends when they had a cough, sneeze or sniffle?


On the way out of those hospital doors, I safely zipped Paige in an imaginary bubble - determined to do whatever it took to keep her safe. Over time (and with the help of an amazing friend with CF), I realized the more I let CF govern our lives, the less of a life we all had. Thanks to my growing faith in God, and the love and support of our friends and family, I found the courage to let go. Instead of spending my time and energy avoiding Paige’s death, I unzipped the bubble and set her free to live life.


I still recognized that viruses and bacteria posed a serious threat to her health. For Paige, viruses would frequently lead to bacterial infections in her lungs, and some of these bacterial infections had the potential to develop into life-shortening. The cold and flu prevention literature I read told us to avoid sick people, wash our hands frequently and keep our hands away from our eyes, mouth and nose. With Paige, we generally found these tips to be worthless– after all she’s a kid that attends daycare, school and Sunday school...AND constantly bites her fingernails!


We set out on a journey to learn tips that would help us minimize the impact cold and flu season had on our household, yet didn't take much time or effort to implement. The tips we've accumulated over the years have been influenced by the medical journals, coursework in Chinese medicine, and trial and error. Please note that while this information helps our household, we ALWAYS bring Paige in for routine visits at the CF Center and start antibiotics (or other medications) when the doctors advise us to do so.


Tips to Avoid Colds and Flu

· Disinfect hands with an alcohol wipe or hand sanitizer every time we get in the car.

· Change household hand towels every 2-3 days.

· Change bed sheets once per week.

· Have guests use paper towels instead of hand towels in bathrooms.

· Spray the sink and shower drains weekly with a disinfectant.

· Do not sit in whirlpool tubs (or turn the jets on in a “sunken tub”).

· Train family members to cover their cough when sick, and have the sick individual use their own designated bathroom (which everyone else avoids until the cold is no longer contagious).

· At the first sign of a cold symptom, take Echinacea up to 3 times each day. Note: we did not give Paige herbs until she was old enough to communicate how she was feeling (age 8).

· Take a Daily-C chewable tablet each day.


Tips for Fighting Off Infections

· Visit the CF center for a throat culture to determine if antibiotics are needed.

· If possible, lengthen airway clearance treatment times (we use a lower frequency for an extra 5-10 minutes).

· Start Tamiflu within the first 24 hours of possible influenza, or give prophylactically if someone else in the house has been diagnosed with influenza.

· Drink orange tea 3 times each day to loosen phlegm (peel organic orange, place 5 strips of the peel in 1 cup of water, boil for 5 minutes, strain and drink the water).

· Drink warm water with honey to soothe coughing.

· Eat lots of pears, almonds, broth soups and green or yellow beans to strengthen the lungs, and avoid icy cold beverages or foods.

· Pray for healing (John 14:14 is a favorite).

· Spread extra strength Tiger Balm on the chest at bedtime.

· Spread essential oils on the back at bedtime (Eucalyptus Globulus, Frankinsense, Basil or Peppermint are favorites).

· Gently massage the following meridian points: LU7, LU 5, LU 3, CV 17-21 if tender, and UB 13.

· Use a kids’ Breath Right strip at bedtime and sleep with an extra pillow if the nose is congested.

· Breathe in steam from hot shower to loosen phlegm and soothe coughing