CF Connection
601 Children's Lane - 2C
Norfolk, VA 23507
CF Connections
Summer 2015
CHKD - CF CENTER NORFOLK, VIRGINIA
Check out these CF related YouTube Videos
Animation: http://www.youtube.com/watch?v=FMAOEOmLoUE
CF at School: http://www.youtube.com/watch?v=__QT583xpU8
Living with CF (teen documentary): http://www.youtube.com/watch?v=Dn0grhu9h4g
Faces of CF (music and photos with facts included): http://www.youtube.com/watch?v=j78UK1cxYKc
10 for 10 for EM: http://www.youtube.com/watch?v=O7_tylvEIRI
CF Awareness: http://www.youtube.com/watch?v=Has3ddC96XA
CF Philanthropy: http://www.youtube.com/watch?v=nGAv2cam7oY
Speech: http://www.youtube.com/watch?v=cx1ocUOzxMw
For Kids: http://www.youtube.com/watch?v=WuI72eMrIQI&feature=youtu.be
A PUBLICATION OF
THE CHKD - CF CENTER
C ARING
FOR
F AMILIES
AND
NORFOLK, VIRGINIA
C ONNECTING
CF Clinic Update
Children’s Hospital of the King’s Daughters
Cystic Fibrosis Center
601 Children’s Lane
Norfolk, Virginia 23507
Median FEV1% predicted for Patients 30 years and Older in 2014
CHKD CF CenterNational Average
All CF Centers
We are so excited about the
developments in CF care,
both in new research as well
as quality improvement. Our
center is currently involved
in 8 new studies, including
CFTR modulation studies as
well as antibiotic trials and
nutrition. Plus, we remain
very active in quality im-
F RIENDS
Cynthia Epstein, MD
Medical Focus
http://www.youtube.com/watch?v=_j99-xgOIaw
http://www.youtube.com/watch?v=ht3FxIg6k-M
http://www.youtube.com/watch?v=csXBIztpKZY
We are on the WEB!
http://www.chkd.org/Our-Services/Programs-and-Clinics/Cystic-Fibrosis-Center/
WITH
provement, striving to reach
and exceed our goals. We
found that our center excels
in several areas, based on
the data from the CFF from
2013. Our center is the top
center in the country for following guidelines for care for
patients 7-17 years of age (4
visits/year, 4 sputum cultures
and 2 PFT per year per patient) and within the top 20
centers for patients 18 years
of age and older. The median
BMI for patients 2-19 years
of age remains above the
50% percentile. The median
BMI for patients 20 years and
older is also above national
average. The median FEV1
percent predicated for patients 6-17 years is 92.2%
(within normal range for all
patients). The median FEV1
percent predicted for patient
18 years and older is close to
the national average. We
would like to see improvement in certain areas such as
improving FEV1 for patients
18 years of age and older,
keeping BMI above 50% for
patients 2-19 years of age,
Are you Springing into Fitness?
Phone: 757-668-7137
E-mail: connie.sigley@chkd.org
General CF Office 757-668-7426
Adult CF Dr. Ripoll 757-474-7447
Check out our website: www.chkd.org
If you’ve been in clinic recently, you have certainly
seen our “Wall of Exercise”
that is part of our Spring into
Fitness program designed to
get everyone moving. Many
people, patients, family and
staff, have chosen icons and
have moved them along the
wall to track their progress in
minutes. If you have chosen
and icon, don’t forget to
submit your exercise in
minutes when you come to
clinic, or e-mail Karen or
Darlene:
Karen.curry@chkd.org or
Darlene.cowcer@chkd.org
not too late to get started!
The program runs through the
summer and will finish the
beginning of September. Ask
about it next time you are in
clinic! You may be the first
winner of the “Golden Sneaker Award”
improving OGTT screening
and increasing use of hypertonic saline and Azithromycin
for eligible patients. We continue work with both the old
and new projects, striving to
reach our goals of improving
each and every person’s pulmonary and nutritional status in our clinic family.
Inside this issue:
MEET OUR NEW
2
PHYSICIANS
PARENT PERSPEC-
3
TIVE
PELVIS FLOOR
4
EXERCISE
MEET OUR NEW CF
5
PHYSICAL THERAPIS
FOCUS ON EXERCISE 6-7
RESEARCH
8
ON THE WEB
9
FINANCIAL HELP
10-11
If you haven’t signed up, it’s
Dr. Gowen places her Icon on the Wall of Exercise
CF Connections
New Adult Physicians
Adult Center Welcomes New Pulmonary Physicians
Joshua Sill, MD, FACP, FCCP
Clinical Interests and Skills: Aerospace and high altitude medicine, Obesity - hypoventilation
syndrome, Cardiopulmonary exercise testing and the evaluation of unexplained dyspnea;
Evaluation and treatment of vocal cord dysfunction
Medical Education: University of Texas Medical Branch: MD : 2002
Residency: Davis Grant Medical Center, CA; Internal Medicine Residency : 2005
Fellowship: San Antonio Uniformed Services Health Education Consortium, Lackland AFB, TX;
Pulmonary/Critical Care/Sleep : 2008
Joshua Sill, MD,
FACP, FCCP
Help continued . . .
Assistance will be provided following support from manufacturer-sponsored copayment assistance and coupon
programs. CFPAF connects enrollees with these other assistance programs and will adjust its award to reflect this
support.
4.
Medical Education: Vanderbilt University School of Medicine: MD : 2004
Residency: Vanderbilt University Medical Center: Internal Medicine : 2007
Fellowship: Vanderbilt University Medical Center: Pulmonary/Critical Care : 2011
Why is there a $15,000 cap per year? Is this new?
Yes, two important CFPAF changes are happening: first, under new regulatory requirements from the HHS Office
of the Inspector General, CFPAF will expand to provide financial assistance for all drugs and paired devices
approved by the FDA that are specifically indicated for the treatment of cystic fibrosis. This expansion, which
goes into effect May 15, is good news for our community. However, in order to ensure that we have sufficient
funds to serve the needs of all eligible people with CF, we will be instituting a cap of $15,000 a year in financial assistance for each enrollee. Please note that this amount is subject to change upon review and contingent
upon the availability of funds.
5.
Michael H. Hooper, MD
Financial Help
Summer 2015
What happens if CFPAF runs out of funding during my enrollment year?
CFPAF actively monitors contributions and assistance provided. If CFPAF anticipates any changes in funding, case
managers will notify enrollees and help them locate alternate assistance.
CFPAF reviews applications on a first-come, first-served basis and may adjust its maximum benefit upon review.
6.
How can I contact CFPAF?
People with CF, their families and care centers may contact CFPAF at 1-888-315-4154 Monday through Friday
from 8:30 a.m. until 5:30 p.m. ET or by email at cfpaf@cff.org.
Michael H. Hooper,
MD
CFPAF applications and a pre-screening tool are available on www.cfpaf.org.
Great Strides Walk
Enrique Calvo-Ayala, MD
Medical Eduction: Universidad Nacional de Columbia School of Medicine: MD : 2004
Internships: Fundacion Santa Fe de Bogota University Hospital: Medical and Surgical Internship : 2004
Graduate School Education: Indiana University School of Medicine: M.S. in Clinical Research : 2013
Residency: Henry Ford Hospital, Detroit, MI ; Internal Medicine Residency : 2010
Fellowship: Indiana University School of Medicine Pulmonary and Critical Care Fellowship : 2013
Board Certifications: American Board of Internal Medicine; Pulmonary Disease : 2012
American Board of Internal Medicine; Internal Medicine : 2010
Enrique Calvo-Ayala,
MD
Page 2
The “Toocie Crew” had a
nice representation at the
Great Strides Walk for CF
this April at the Oceanfront. Although the day was
a little rainy, everyone still
had a great time.
Our team raised $1265 to
help CF stand for “Cure
Found”
Page 11
CF Connections
Financial Help
Help with copays and out of pocket expenses IS available
Under new regulatory requirements from the HHS Office of the Inspector
General, CFPAF will expand to provide financial assistance for all drugs and
People with CF,
their families and
care centers may
contact CFPAF at 1
-888-315-4154
Monday through
Friday from 8:30
a.m. until 5:30
p.m. ET or by
email
at cfpaf@cff.org
paired devices approved by the FDA that are specifically indicated for the treatment of cystic fibrosis. This expansion, which goes into effect May 15, is good news
for our community. However, in order to ensure that CFPAF has sufficient funds to
serve the needs of all eligible people with CF, CFPAF will be instituting a cap of
$15,000 a year in financial assistance for each enrollee. Please note that this
amount is subject to change upon review and contingent upon the availability of
funds.
Below, you will find FAQs to guide you in answering questions about the upcoming
changes to CFPAF. As always, please reach out to us should you have any questions
or require additional information.
1.
What is the CF Patient Assistance Foundation (CFPAF)?
The CF Patient Assistance Foundation (CFPAF) is a non-profit organization, operated
by the Cystic Fibrosis Foundation and funded by corporate and nonprofit donors. Our
mission is to provide financial support to people with CF who have limited health insurance or financial resources so they can afford the treatments they need to manage
their disease and live full, productive lives.
2.
What are CFPAF eligibility criteria?
CFPAF applicants must meet all of the following criteria:

Diagnosis of CF;

Permanent resident of the United States;

Household income
must be equal or
less than 400 percent of the Federal
Poverty Level (FPL)
for a single CF
patient household,
or equal to or less
than 500 percent
of the FPL for a
multiple CF patent
household
Household income must be equal or less than 400 percent of the Federal Poverty
Level (FPL) for a single CF patient household, or equal to or less than 500 percent of
the FPL for a multiple CF patent household; and

Requesting support for drugs and paired devices approved by the FDA that are
specifically indicated for the treatment of cystic fibrosis and/or Social Security application support.
Use the online pre-screening tool or contact CFPAF to determine eligibility.
3.
Does CFPAF cover the entire cost of medications?
No. CFPAF offers co-pay, co-insurance and deductible assistance. In order to make
financial assistance available to more people with CF, the maximum amount of assistance CFPAF can provide to each enrollee is $15,000 per enrollment year. This
amount is subject to change upon review and contingent upon the availability of funds.
Page 10
Parent Perspective
Summer 2015
Finding Time for Treatments
by Tim Goetz
M
y daughter,
Hannah, was diagnosed
with Cystic Fibrosis in 2010.
At the time she was 10
years old. When her mother and I were first challenged with her diagnosis,
we had no idea what was
ahead of us or what we
were in for. We were
shocked to find out that this
condition has been with her
since before birth. We would
soon found out all the medications and treatments that were
involved.
The biggest hurdle
that we faced was getting her
treatments done with the short
amount of time we had to do
them in, the biggest being her
vest. She was very involved in
after school activities like soccer and musical theater, often
she did not have enough time
to get all of her treatments in;
we were constantly trying to
find the hour or so that was
needed to complete all the
treatments. When her mom
began teaching at a school 45
minutes away from home we
struggled to find the time
necessary to get her treatments in before as well as
after school.
We ran across a
blog on the internet called No
Excuses and found an entry
called “Vesting in the Car,”
written by a lady about doing
her treatments in her car. After researching what steps
Page 3
would be necessary to make
our own vehicles capable of
providing such power needed
to use Hannah's vest, I contacted Premier Autosound in Chesapeake Virginia at 3322
Western Branch Blvd. We
explained the problem to the
power inverter specialist,
Mike, who recommended a
particular power inverter that
could handle both the vest
and the nebulizer at the same
time.
We went with the
Pro Watt SW 1000 that provided at least 900 watts of
continuous sine wave power.
After choosing this particular
inverter, Mike then explained
what was needed to accomplish this task. This device
would be hard wired to the
battery with a fuse that would
allow the inverter to be
moved out of one vehicle and
put it into the other. It was not
necessary to upgrade the
alternator as the one in both
vehicles were sufficient to handle the inverter. We also had
“remote” switches installed
within reach of the driver that
allowed us to turn on and off
the device with a push of a
button.
This has been a huge blessing
to our family and to Hannah.
She now does most of her
treatments while going back
and forth to school or
just traveling in general. It has made more
free time in the afternoons for participating
in all her favorite activities. Hannah's life
has been much more
enjoyable. This “fix”
was not without a considerable amount of
expense, it cost about Power Inverter—
$800 for the inverter
Premier Autosound, Chesapeake
and to wire both vehicles but it has given her
the ability to live a
somewhat normal life;
one cannot put a price
on that. We thank Mike and
the people at Premier Auto“THIS HAS BEEN A
sound for their expertise and
HUGE BLESSING TO
friendly service, without them
OUR FAMILY AND
Hannah would be struggling
TO HANNAH.
to find time to be a kid and a
Cystic Fibrosis patient at the
SHE NOW DOES
same time. Things have been
MOST OF HER
so much better since we have
TREATMENTS WHILE
had the inverter installed, it
GOING BACK AND
has been very much the investFORTH TO SCHOOL”
ment of a lifetime.
Hannah can now do her vest and nebulizer treatments
in the car on the way to and from school.
Focus on Exercise
CF Connections
Importance of Pelvic Floor Exercises
“over 50% of females with CF also
have urinary incontinence- or leakage
from the bladder.
This is usually associated with coughing, sneezing and
vigorous exercise.
Although not as
common males can
have this issue as
well.”
Clinic appointments are usually incredibly packed with consultations regarding your airway clearance, diet, PFT’s,
and overall health. But we
have a new question? Are
you leaking with coughing
or exercise? Even if it is just
when you are sick that is still
not normal and we have things
you can do to improve this.
This should not be embarrassing as over 50% of females
with CF also have urinary incontinence- or leakage from
the bladder. This is usually
associated with coughing,
sneezing and vigorous exercise. Although not as common
males can have this issue as
well. Wearing protective
pads should not be your only
recourse- most people can
decrease or totally eliminate
their leakage by performing
pelvic floor exercises…. and
the good news is that you can
incorporate these exercises –
aka Kegels- into your daily
activities.
Even if you are not experiencing any problemPrevention is the key! Below are the most important
things you can do to prevent unnecessary downward
pressure on your pelvic floor:




Page 4
Make sure you always “huff” to cough
Always perform the KNACK (see below) with each
cough. (KNACK before you hack)
Do not strain with bowel movements- if you are,
ask one of our doctors for help with this.
Do your Kegels 30x day (see below)
If you are still experiencing leakage after 6 weeks
of doing the exercises ask to be referred to a
pelvic floor physical therapist.
Pelvic Floor Exercises
How to do the Kegel: The PF
(pelvic floor) muscles consist
of approximately 9 muscles
including the sphincters of the
rectum and urethra. The
good news is that these muscles contract and relax as a
unit- so if you contract the
muscle you would use to hold
back gas- it is the same muscle that contracts around the
urethra. Many people think
it is a good exercise to stop
the flow of urine as an exercise- although this is an excellent way to “find” the PF it is
not healthy for the bladder
to do on a regular basis.
By Sharon Ross
On the Web
Summer 2015
MyCHKD now available
Children’s Hospital of The
King’s Daughters is proud
to introduce MyCHKD, a
service that will make life
easier on parents and improve their children’s
healthcare at the same
time.
Benefits of MyCHKD
Secure Online Access
MyCHKD offers secure,
online access to medical
records as well as tools to
help you communicate more
efficiently with your CHKD
pediatric practice. You can
even connect to MyCHKD
from mobile devices, so you
can have the information
you need whenever and
wherever you need it.
If you need ...Just Click

A list of medications
your child has taken
recently

Health Record

The name of medications or other items
your child is allergic to

Health Record

A prescription refill

Medications

Your child's immunization record

Health Record
To remember the date of
an upcoming appointment

Appointments

To cancel that appointment

Appointments

To review your child's
test results

Results

More information on
your child's condition

Health Information

To ask a question about
your bill

Billing & Payments

A copy of your child's
medical record

Medical Records
“you will get the knack”
To perform a Kegel think of
“holding back gas” or drawing your sit bones together
and hold for 5 seconds. Do
not hold your breath – try to
breath naturally. Eventually
increase the hold to 10 seconds – still remembering to
breath. The good news is
that you can do the Kegel
while doing airway clearance, walking, lifting weights
and every time you wash
your hands. The downside is
that the exercise needs to be
done 30 times a day (try 10
contractions 3x/day). Once
your leakage stops you can
do 10 reps 2x/day.
The KNACK: KNACK stands
for Kegel and an Abdominal
Contraction with a Cough and
is probably the most important thing you can do to
prevent of control leakage:
Place one hand on the belly
and one over your mouth.
Draw in your belly and Kegel
as you pretend to cough.
Jerry Cahill:
Celebrating 10 Years of
Cystic Fibrosis
Podcasts
Congratulations to CF
Ambassador, Jerry Cahill, for reaching such an
amazing milestone! The
Boomer Esiason Foundation CF Podcast series
has been a huge success
for the past ten years providing educational
and informative podcasts and videos - and
Jerry plans to keep going for the next ten
years.
Page 9
Frequently Asked Questions about MyCHKD
How do I get started?
Parents/legal guardians must register for a MyCHKD
account in person at the pediatrician’s office. This only
takes a few minutes. After that, you will receive an email at the address you provide with instructions on how
to set up an account. Please note: if you provide a
shared e-mail address, anyone you share that address
with will also be able to see the e-mail.
What should I take with me to the pediatrician’s office to register?
Please make sure you bring your picture ID to the pediatrician’s office to register for a MyCHKD account.
Do I have to have a computer?
You can set up a MyCHKD account on any mobile
phone, tablet or computer that has internet access.
How long does it take to set up the account?
Setting up a new account is very simple. If you can
type a text message, you can set up an account. The
whole process should take about five minutes.
Are my child’s records still private?
CHKD is very serious about protecting the privacy of
your child’s medical information. We treat online records with the same high degree of confidentiality that
we give to all other records.
What about e-mail privacy?
MyCHKD account holders should be aware that they
will be notified by e-mail for certain features, including activation. This means that any person with access
to their e-mail inbox will be able to see this notification.
Can anyone have a MyCHKD account?
MyCHKD is offered to parents/legal guardians of
children ages birth to 14. With written permission of a
parent/legal guardian, a teen may establish a MyCHKD account at age 14.
CF Connections
Research
Are you interested in participating in clinical trials?
The CHKD CF center is currently involved with several clinical trials. Each study has specific requirements for enrollment. We do our best to contact any patients and families that may be eligible. If
you have any questions regarding enrollment in clinical trials see below for more online information.
Focus on Exercise
Summer 2015
Meet Lauren, Our new CF Physical Therapist
I'm very excited to have been given the opportunity to join the cystic
fibrosis team! I have been a pediatric physical therapist at CHKD
now for almost 3 years working at CHKD's outpatient locations and
at the main hospital. Exercise has always been important to me and
is one of the main reasons I wanted to become a physical therapist.
My interest in exercise initially led me to Virginia Tech where I received my bachelors in Human Nutrition, Foods and Exercise. I then
attended Old Dominion University where I received my Doctor of
Physical Therapy degree. To this day I am still an avid runner, running in half marathons and marathons, but I also enjoy trying
new sports and different forms of fitness. I look forward to helping
my patients find an exercise routine that works for them and their
lifestyle but to also address any musculoskeletal concerns such as
posture and pain. I look forward to meeting and working with you in
clinic!
Lauren Robinson, Physical
Therapist
Questions for Lauren ? Lauren.robinson@chkd.org
Awesome Apps
Rock CF

My Fight Against Cystic Fibrosis
$1.99 and worth it!
 Also Cystic Fibrosis Med Scheduler—free
Objective
New exciting drug development in the CF Pipeline
CFTR Modulators
These therapies are designed to correct the function of the
defective protein -- the cystic fibrosis transmembrane conductance regulator (CFTR) -- made by the CF gene. It allows
chloride and sodium (salt) to move properly in and out of
cells lining the lungs and other organs. For more information, check out CFF.org
Page 8
The Rock CF Kicks Back Program was started by the Rock
CF Foundation to inspire patients with cystic fibrosis to
experience the benefits of
exercise and empower them
to set and accomplish goals.
Rock CF Kicks Back will donate running shoes throughout
the year to CF patients, and
sign them up for the race of
their choice.
Ready to Kick?
If you are a CF patient and
would like to start running,
walking or getting active and
need new kicks please print
this application off, take it to
your CF Care Team for approval, and then send it back
to us. Scan and email to Emily@letsrockcf.org. Mail to:
Page 5
but basic scheduling
Rock CF Foundation to
inspire patients with
cystic fibrosis to experience the benefits of
exercise and empower
Rock CF Foundation
2990 W. Grand Blvd
Suite M-21 Detroit, MI
48202
Focus on Exercise
CF Connections
High Intensity Exercise is Key
Focus on Exercise
Summer 2015
By Sharon Ross
Perfecting Your Breathing Technique During Running
High intensity
means that you
are getting your
heart rate (HR)
above 60 to 80%
of your max HR.
Last October’s NACFC in
Atlanta was inspiring to say
the least. There was lots of
energy and excitement regarding the new drugs Kalydeco and Ivacaftor because at last we are treating the cause (the CFTR
gene) of CF. But there was
also plenty to say about
continuing the tried and
true – medications, airway
clearance and exercise.
I wish I could say that the
conference showed us new
airway clearance techniques (ACT’s) that are
faster- or you need to do
them less often…. Unfortunately it is the opposite.
There were more studies
that showed lung function
improved with adding an
additional ACT into your
schedule. This means adding it to your normal home
routine or to your ACT
schedule in the hospital.
But do not take this as a
negative- let this empower
you to “step it up” on days
you might be feeling a little
tight- or maybe you just
have some extra time – so
why not do a round on your
Acapella or Aerobika even
better do 20 minutes of high
intensity exercise. Most of
the MD and PT guru’s are
now emphasizing that high
intensity exercise can be
considered airway clearance. ***
which you can do intervals
are running/walking or biking- or doing a vigorous exercise DVD.
Believe it or not the warm-up
for Insanity is a great
workout.
Do this for 20-30 minutes- 35x/week and you have
done the following:
 Improved airway clearance including sputum
So what is high intensity
production
exercise? High intensity
 Improved lung function
means that you are getting
and O2 levels in your
your heart rate (HR) above
blood
60 to 80% of your max HR.  Gained muscle mass and
In easier language- if 5/10
stimulated bone
is walking at a pace where
 Improved blood glucose
you could go for hours- and
levels
10/10 is climbing Mount
 Improved your immunity
Trashmore as fast as you can  And you feel better!
- then 6-8/10 is working
Weight training, Pilates and
hard enough to get short of
Yoga were highlighted- all
breath but not so hard you
showing benefits with the focused breathing. Focusing on
can’t do it for several
your exhale during these exerminutes. The most efficient
cises was shown to decrease
way to exercise is to do intervals: meaning go at a 7- hyperinflation.
8/10 pace for 1-2 minutes- If you want guidance in setting
up an exercise program contact
and then go at a 5-6/10
Connie or your doctor. We can
pace for the same amount of set you up with a few “personal
time. Types of exercises in training” PT sessions to get you
on a routine that can match
your schedule.
Perfecting Your Breathing Technique During Running
*** with specific approval from
your physician
If you are a new or seasoned runner, one thing that you do need to be making sure you are aware of is the breathing pattern
you’re using. Improper breathing technique can impair your running performance. Proper breathing technique will also help
you maintain good form as you run (and likewise, good form fosters better breathing as well), so with these two working together, you can enjoy your runs that much more.
So how should you breathe? Let’s go over the facts that you should know.
Focus On Slower Breaths First, you want to aim for slower, deeper breaths. If you’re breathing rapidly and taking very short
inhales and exhales, this will lead to greater carbon dioxide development and less oxygen getting to the muscles.
Slower breaths will also help to keep your heart rate down lower, which can also play a key role in fatigue management.
When you start picking up the pace of your run, your breathing rate will naturally increase to keep up with the demand for oxygen, but as much as possible, you do still want to focus on keeping them as slow as possible.
Page 6
continued . . .
Deep breaths will utilize more total air sacs in your lunges, which increases total oxygen levels in the body.
Belly Breathing Next, you also want to be sure that you are focusing on breathing from your belly, not from your chest. Most
runners out there are going to be breathing deeply from the chest region, which can cause their shoulders and neck muscles to be
tenser, wasting energy in the process.
If instead you breathe from your belly instead, you’re going to avoid this and get more total oxygen in. To experience belly
breathing yourself, do a little experiment. Place one hand on the chest region and one hand on your belly region. Take a deep
breath in as you normally would. Which hand moved outward? If it was your chest, you’re a chest breather. If it was your belly,
you’re doing things correctly. Start practicing belly breathing more often and you will soon get into the habit of making this the
breathing type you use. It is a harder habit to build, but once you do, you will definitely notice the benefits.
Time Your Breathing
Some runners may also prefer using a time count to help them regulate their breathing. This can be especially helpful for when
you are just starting and are prone to breathing too quickly. You want to try and take a deep breath in, lasting for four steps.
Then on the next four steps, breathe out. Learning how to time your breath with your foot patterns will help ensure that you are
keeping them in check and maintaining a balanced running motion. It’s also a good reminder to aim to breathe through your nose
rather than mouth as often as possible. This will help you breathe more efficiently as you go about your run, which in turn means
better performance.
Breathing during running is something that many people do really struggle with as it can be hard to regulate, especially if poor
habits have been formed. But, take comfort in knowing that if you do work at it, you will not only see a dramatic rise in the performance you give, but you’ll also see a dramatically lowered rate of fatigue. This helps you enjoy your
runs even further and make sure you get hooked on the sport for good
Is an
Zen Lab’s free C25K – 5K Trainer
Awesome Free App to get you started running.
Couch to 5K in 3 workouts per week.
Start walking and gradual increase to running with
Encouragement along the way.
Play your own music through the workout.
Regular Exercise as part of your CF Care
Determine your starting place. Becoming physically active is a big vow. Too often, we begin an exercise program but quickly quit. Change doesn’t happen all at once, nor does it happen at the same rate for different people. Start by finding your
“stage of readiness.” A member of your care team can help you do this and start your exercise program
“The continued push to find joyful activity that I CAN do keeps me healthier and grateful and gives me a
reason to smile each day.”
Regular exercise has become an important part of my CF (life) care. Depending on my body's needs and where I
am at the time, my choice about what activity to do can have a wide range. Sometimes it just needs to be a lap
around the hospital unit, sometimes it's a walk around the block or housework with music. It can be 20 minutes of
dancing, or even an hour of hula hooping with friends. I also love to bike, swim, longboard, snowboard and hike. I
like to mix it up, doing as much as I can. The continued push to find joyful activity that I CAN do keeps me healthier and grateful and gives me a reason to smile each day Kori, age 32 courtesy of CFF.org
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