Volume 2, Issue 2 April 2014
Dr Cairns and the CF Clinic team would like to recognize the outstanding work of the
Maine CF Family Advisory Board, as this is the first time that Family Education Day is being entirely organized, funded and hosted by the family group! They have chosen to move the location for the event to Augusta in hopes to make it possible for more families from central and northern Maine to attend. Please join us in congratulating the Board!
Maine CF Family Advisory Board
Invites you to join us for the 2014 CF Family Education Day
Thursday, May 1st 8:30 AM - 2:30 PM
At the Senator Inn in Augusta, Maine
Our topics for discussion will include:
 You Want Me To Do What?? The evidence behind recommended daily therapies. Colby
Wyatt MD, PHD.
 Living with CF Ron Sharpe. Ron Sharpe is an adult with CF, founder of CysticLife.org a social network, and creator of the blog RunSickboyRun.com, a positive and inspiring blog describing the life experiences of an adult with CF.
 Breakout Sessions: Small group discussions on the following topics will be led by CF team members:
1.
Navigating the insurance world
2.
First admission to the hospital, what to expect, what to bring
3.
Coping with a chronic disease
4.
How to make nutrition work
5.
CF related diabetes
6.
Vocational rehab, planning for careers
7.
Infection control
8.
Questions for your pharmacist
Please choose 2 breakout sessions when you RSVP. Bring your thoughts and questions.
Representatives will have tables set up with educational materials and information on products and medications used in treating Cystic Fibrosis.
 For individuals with CF unable to attend the meeting, we will be live streaming the event.
Please go to CFFamilyadvisoryboard-maine.com for instructions prior to the event
 Lunch will be provided
 PLEASE RSVP THE NUMBER IN YOUR PARTY ATTENDING AND PREFERENCE FOR
TWO BREAKOUT SESSIONS!
 For Pediatrics: RSVP to Karen Wilde @ 662-5743
For Adults: RSVP via email to Alicia Murry at amurry@mmc.org

CCCC (Cindy’s Clinic Coordinator Chatter)
How well do you know your
CF clinic team?
TRIVIA
1.
Which member of your CF team
LOVES to dance?
2.
How many members of your CF team ride motorcycles?
3.
Where are the 3 team members with awesome accents from?
4.
How many pediatric CF providers
(MD, DO, NP) do we have now at our center?
5.
How many members of our team do you think have done posters or lectures at the North American
CF Conferences?
Answers:1. Meg, 2. Three, 3.
England/Scotland, 4. Five, 5. Five
This newsletter will be sent out quarterly to all families who provided us with an email address on your Port CF, yearend survey.
Copies are available at Clinic for those who do not have email.
Please give us feedback and tell us about what you would like to see in upcoming issues! We are a work in progress!
Vitamins are needed for the normal growth, function, and health of our bodies. People with CF need extra vitamins for good health.
Vitamin A has many roles in health: normal vision, bone and tooth formation, cell function, and immunity. Vitamin A also works to help fight infections and to keep the intestines healthy.
Vitamin D helps to build and maintain strong bones and teeth.
Without enough vitamin D, bones can become thin and brittle.
People with CF are at risk for bone problems. So, it is important to get the right amounts of vitamin D every day.
Vitamin E is an antioxidant, which means that it protects compounds in the body from combining with oxygen. When compounds become oxidized, they become harmful to the body.
Vitamin E helps to keep red blood cells healthy. It also helps to fight infection and maintain the health of the intestines.
Vitamin K is best known for its role in helping blood clot. It also helps to keep bones healthy.

Please help TBS support Ashley’s team for the Portland Walk on May 17 th .
The sisters of TBS are taking donations for pins that we have made to honor Ashley. The pins are small purple ribbons with a rosebud. The purple ribbon symbolizes CF, the rosebud symbolizes Ashley. Our goal is to sell 65 pins! Children with CF are taught to say ‘sixtyfive roses’ instead of Cystic Fibrosis when they are little, because it’s easier for them to say!
SixtyFive Roses=Cystic Fibrosis
Ashley at a UMaine Hockey game in Orono, ME
This team is in memory of Ashley Drew, a musician from Scarborough, ME who passed away in July 2013 at the age of
26 after a long and hard battle with CF. She was a positive influence on everyone she came in contact with, and was vibrant and always looking up. She played flute, tenor sax and horn in multiple UMaine bands and always looking to further her education whether through classes or jobs. Please join this team to help raise funds for research for a cure, as well as to remember our beloved Ashley.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Your donation helps us to add tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF
Portland Area Walk May 17 th
Augusta Area Walk May 18 th
York Area Walk May 18 th
Go to www.cff.org
for more info. We hope to see all of you at a walk this year!!!

ACTs loosen thick, sticky lung mucus so it can be cleared by coughing or huffing. Clearing the airways reduces lung infections and improves lung function. There are many ACTs. Most are easy to do. For infants and toddlers, ACTs can be done by almost anyone. Older kids and adults can do their own ACTs.
ACTs are often used with other treatments, like inhaled bronchodilators and antibiotics. Bronchodilators should be taken before or with ACTs to open airways. Inhaled antibiotics should be taken after ACTs to treat opened airways. Your CF care team will help you choose the best ACT and other treatments. Each year, review and update your routine with your CF care team.
Some of the Airway Clearance Techniques use in CF Care:
Coughing is the most basic ACT. It is a reflex. It clears mucus with high-speed airflow. But sometimes mucus cannot be cleared just with a lot of coughing. Coughing a lot can make you feel more short of breath and worse, not better. Huffing is a type of cough. It also involves taking a breath in and actively exhaling. It is more like “huffing” onto a mirror or window to steam it up. It is not as forceful as a cough but can work better and be less tiring.
Chest Physical Therapy (CPT or Chest PT) or Postural Drainage & Percussion (PD&P) is an ACT that often includes postural drainage and chest percussion. With postural drainage, the person gets in varied positions (postures) that drain mucus from different lung parts.
Gravity pulls mucus from small to large airways where it can be coughed up. With chest percussion the chest is clapped and vibrated to dislodge and move mucus. This is done in varied positions to drain all lung parts.
Oscillating Positive Expiratory Pressure (Oscillating PEP) is an ACT where the person blows all the way out many times through a device. Types of Oscillating PEP devices include the Flutter TM , Acapella TM , Cornet TM , Areobika and
Intrapulmonary Percussive Ventilation (IPV). Breathing with these devices vibrates the large and small airways. This vibration thins, dislodges and moves mucus. After blowing through the device many times, the person coughs or huffs.
This cycle is repeated many times.
High-frequency Chest Wall Oscillation also is called the Vest or Oscillator. An inflatable vest is attached to a machine that vibrates it at high frequency. The vest vibrates the chest to loosen and thin mucus. Every five minutes the person stops the machine and coughs or huffs.
Positive Expiratory Pressure (PEP) Therapy gets air into the lungs and behind the mucus using extra (collateral) airways. PEP holds airways open, keeping them from closing. A PEP system includes a mask or mouthpiece attached to a resistor set by your CF care team. The person breathes in normally and breathes out a little harder against the resistance.
Active Cycle of Breathing Technique (ACBT) involves a set of breathing techniques. It can be changed to meet each person’s needs. It gets air behind mucus, lowers airway spasm and clears mucus. It includes:

Breathing control – normal, gentle breathing with the lower chest while relaxing the upper chest and shoulders.
 Thoracic expansion exercises – deep breaths in. Some use a three-second breath-hold to get more air behind the mucus. This may be done with chest clapping or vibrating, followed by breathing control.

Forced expiration technique – huffs of varied lengths with breathing control.
Autogenic Drainage (AD) means “self-drainage.” It uses varied airflows to move mucus. It aims to reach very high airflows in different lung parts. This moves mucus from small to large airways. AD has three parts: 1.Dislodging mucus,
2.Collecting mucus, 3. Clearing mucus
The person inhales to different levels and then adjusts how they breathe out to heighten airflow and move mucus. At first, AD takes hard work and practice. It is best for people over 8 years old.
Conclusion: This is a brief overview of some of the Airway Clearance Techniques used. ACTs can be varied based on your disease, your care center or even your country! Your CF care team will help you choose what is best for you.