Volume 1-4 - Emory Healthcare

September 24, 2013 Volume 1, Issue 4
Breathe Strong
A quarterly interactive publication for adults living with cystic fibrosis
My, How We’ve Grown!
WANDERINGS FROM THE WEB:
When the Emory Adult CF
Program first moved to The
Emory Clinic in 2008, we
started with 140 patients.
With regular inflow of new
patients transitioning from
pediatrics and other CF centers,
we now have 240 patients!
With growth comes necessary
change, to ensure the
quality care we provide is
both effective and efficient.
We’ve updated our phone
and virtual communications
processes to better meet the
needs of our growing adult
population.
You can reach members of
the CF team through the
main CF line: 404-778-
7929. The main menu will
provide you with five options
that will direct you to each
individual staff members’
extension. After normal
business hours (8am-
4:30pm), the line will take
you to the Emory Operator
to get in touch with the on
call pulmonary physician for
urgent needs. Or a message
can be left for any of the
staff to be received the following
business day.
The Emory Healthcare Patient
Portal is another preferred
means of communication.
It is a convenient and
secure tool you can use anywhere
you have access to the
Internet to correspond with
your physician, request prescription
refills, and check
lab results. If you are not
signed up for the patient
portal, you can do so at your
next clinic appointment.
In order for us to serve you
best, please allow 7 days
notification for prescription
refills and 14 days for requests
for letters, disability
forms, etc. While we are
likely able to respond to
such requests sooner, we
want to allow for plenty of
lead time in getting you
what you need.
We are proud to be growing
in our service to the CF
community in the Atlanta
area and beyond. Thank
you for your patience with
us during this exciting
phase continued growth.
We are ever reminded that
we are here to serve YOU!
Be sure to take a peek at
the highlights of this newsletter,
including:
*Feature article on Andrew
Crane and his involvement in
Great Strides
*Back to school guide for balancing
CF and college
*Director’s Introduction, Dr.
Randy Hunt, a new physician
joining our team
*Request for holiday family
photo submissions
Happy Fall Y’all!
-Your CF Care Team
Boomer Esiason Foundation
CFF: Information for Adults
CFF Great Strides
Breathing Room
CF Wives (FB Page)
Confessions of a CF Husband
(Blog)
Emory Adult CF Program:
Achieved Newsletters
To access the websites here
and within this issue, hover
your mouse over the name of
the site and click.
The “CF Walk”- A Reflection
by Andrew Crane
Patient Spotlight 1
Great Strides has long been
one of the CF Foundation’s
biggest fundraisers. As a CF
patient, it has always had a
presence in my life as “the CF
walk” – the ubiquitous fundraiser
to end all fundraisers.
I have never participated
before this year. I was always
busy, or out of town, or too
sick. “This year I’m going to
do it!” I vowed at the beginning
of the year as part of my
resolutions. I am happy I
kept that promise. My team
surpassed their fundraising
goal and we had a great time
at the event itself.
But, moreover, I finally saw
the true measure of the commitment
and dedication of
the CF Foundation and its
greater Atlanta community.
There are truly no better
people to have in your corner.
Since Great Strides, Andrew
was accepted to medical
school at Medical College of
Georgia in Augusta, where he
began classes on August 5th.
Way to go Andrew!
Pictured: Andrew and his 2013 Great
Strides Team
To College & Beyond 2
Director’s Commentary 3
Healthcare Reform: 3
The Basics
CF Community 3
Resource Rolodex 4

Page 2
To College and Beyond
by Shaina Blair, LCSW
With Fall comes ’Back to School’ and many of our young adults have newly enrolled in or returned to college. I thought it fitting to
share some of the highlights from a recent webcast put together by the Boomer Esiason Foundation in collaboration with Novartis,
titled, “CFurther: Planning for College and Beyond.”
The webcast, which is now archived and still available for viewing, offers pointers for preparing for college and tips for balancing self
care and academics. The webcast included a speaker panel, which offered a variety of perspectives on the college experience. Gunner
Esiason, son of Boomer Esiason, who has CF and is a recent graduate of Boston College, offered the perspective of a student balancing
college and health. Gunner’s sister, Sydney, offered the viewpoint of a sibling and her role in supporting her brother through college. A
CF mom of two daughters with CF (also college graduates) offered great pointers for parents. Lastly, an adult CF social worker from
Beth Israel Medical Center in New York spoke about resources available to college students and the role of CF center staff in supporting
students pursuing higher education.
During the webcast Gunner verbalized something I hear all the time, “I just wanted to have a normal college experience.” Fortunately,
he learned an important lesson early on in his college experience and iterated it quite well in his own words, “You must take care of
yourself to have a normal college experience.” Here is a quick overview of Gunner’s MUSTS when preparing for success at school.
Choose a school wisely considering your physical (weather/ environment) and emotional (nearness to family and social supports)
needs as well as the school’s proximity to a CF center
If you’re away from your home CF center, establish local CF care before school starts. Don’t wait until you’re sick to meet your new
care team.
During the admissions process, sign up for advocacy services through the on campus disability office and learn about available
accommodations.
Take charge of your schedule. Establish a routine and choose classes later in the day to make time for a.m. treatments and rest
Take good care of yourself by staying hydrated, being involved in intramurals or taking an exercise course for credit, knowing your
environment and what to avoid, and especially knowing your limits- what you can do without compromising your health.
Never let yourself go out with friends until you’ve done your evening treatments (Wow! Now that’s discipline!).
ALL the tools for success as a college student with CF can be found by watching the webcast and reviewing the supporting materials
made available at the links below.
CFurther Webcast Tips for Living on Your Own in College Dorm Room 101: What to Bring
Tips for Friends/ Roommates A Parent’s Guide to College Dorm Room 101: What to Do
Addicted to Tacos?
Want to get more out of eating tacos than just a full belly? Well now you can have your tacos and eat them too.
Ok, not really....
But, you can have some delicious tacos and help raise money for a worthy cause:
Cystic Fibrosis.
It's a win-win!
Red Pepper Taqueria (the corner of Briarcliff and LaVista) has teamed up with Dr. Randy Hunt to raise funds for the Cystic Fibrosis
Foundation. On September 25th the Briarcliff Rd. Red Pepper Taqueria will donate 15% of its sales to the Georgia Chapter of
the Cystic Fibrosis Foundation. All you have to do is go and eat lunch or dinner (or both!) and mention to them that you care
about CF!

Page 3
Doing a 5K, 10K or half marathon?
Let us know! Send date and location of
the race you participated in, a photo and
your race time (if you wish), and we’ll
share your accomplishment in our
newsletter!
Pictured: CF Dietitian, Jessica Enders, and
CF Social Worker, Shaina Blair at The Dog
Days 5K in Marietta on August 10th.
“The exciting part was running into one of our
CF patients, who beat both our race times!!”
-Jessica
Director’s Commentary
by Seth Walker, MD, Emory Adult CF Program Director
As our program has been growing steadily over the last few years, our clinics have become full
more often then not. Dr. Sueblinvong and I have often had to overbook
to fit everyone in. Fortunately, help has arrived.
I am pleased to introduce Dr. Randy Hunt to the Emory Adult CF Program.
Dr. Hunt is almost local, growing up in South Carolina. He
graduated from the Medical University of South Carolina, then completed
a combined internal medicine/pediatrics residency in Indianapolis,
IN. He came to Emory for his adult pulmonary and critical care
fellowship, from which he recently graduated with distinction. During
his fellowship, he performed research in Nael McCarty’s lab, working
on developing a mouse model for CF-related diabetes. His presentation
of this research earned him an honorable mention for the Young Investigator Award at
the North America CF Conference last year.
Dr. Hunt will have a regular clinic on Thursday mornings. He will see many of the new patients,
but will also see established patients for sick visits and antibiotic follow up. We feel he
will be a great addition to our strong program and believe you will agree. Please help us welcome
him...and try not to be intimidated by the bowtie.
Healthcare Reform– The Basics
contributed by Shaina Blair, LCSW
Healthcare reform is clearly a hot topic across the country, within the healthcare community and
even within our own CF center. Its impact will certainly be far reaching. Like any major policy
change though, its difficult to predict precisely how its implementation will affect each of us as
individuals. Below is an excerpt from healthcare.gov that provides a brief overview of the rights
and protections written into the new law. Please contact me if you have specific questions or concerns
about your coverage.
Whether you need health coverage or have it already, the health care law offers new rights and
protections that make coverage fairer and easier to understand. Some rights and protections apply
to plans in the Health Insurance Marketplace or other individual insurance, some apply to jobbased
plans, and some apply to all health coverage. These rights and protections provide even
more choice and control over your health coverage when key parts of the law take effect in 2014.
How the health care law protects you
Creates the Health Insurance Marketplace, a new way for individuals, families, and
small businesses to get health coverage
Requires insurance companies to cover people with pre-existing health conditions
Something we always look forward
to as a team is getting family pictures
from our patients around the
holidays. This year, we would love
to share this with the larger CF
community. We invite you to
submit your family holiday photos
to be included in our December
newsletter. Submission deadline is
December, 1st. Submit via email
to:
shaina.blair@emoryhealthcare.org
Helps you understand the coverage you’re getting
Holds insurance companies accountable for rate increases
Makes it illegal for health insurance companies to arbitrarily cancel your health
insurance just because you get sick
Protects your choice of doctors
Like us on
Facebook!
Search: Emory Adult CF Program
Covers young adults under 26
Provides free preventive care
Ends lifetime and yearly dollar limits on coverage of essential health benefits
Guarantees your right to appeal

Page 4
Nutrition News
Contributed by Jessica Enders, RDLD
New Enzyme Available: Pertzye is an additional pancreatic enzyme product now available
on the market. Marketed by Conrnerstone Therapeutics Inc., Pertzye is different from other
pancreatic enzyme products in that its enteric-coated microspheres are bicarbonatebuffered
for better absorption. If you have questions about this product or are interested in
more information you can access the press release at: PERTZYE PRESS RELEASE
**This article is meant to inform those with pancreatic insufficiency of Pertzye and is not an advertisement
or recommendation for the use of this product over other pancreatic enzyme replacement therapies.
What’s New With the CF Care Forward Program: A new vitamin has been added to the CF
Care Forward Program’s line up of multivitamins available. The multivitamin is called
“Complete Formulation Multivitamin Softgels” and can be ordered by calling 1-855-
CARE4WD or by selecting it on the CF Care Forward Reorder form available at clinic. If you
would like a reorder form, please contact the dietitian, Jessica Enders, RDLD at 404-778-
7929 to have one sent to you.
Please note that the CF Care Forward Program is provided by AbbVie, Inc. for those using
Creon pancreatic enzymes. Those with Medicaid, Medicare and Tricare insurances do not
qualify for this program.
Resource Rolodex– Resources for copay assistance, legal and vocational services
CF Legal: The CF Legal Hotline provides free information about the laws that protect rights
of individuals with cystic fibrosis. It serves as a resource for CF Care Centers, individuals with
CF, and their families. Information is available regarding: obtaining insurance, health coverage
under COBRA, Social Security Disability benefits, Medicare and Medicaid, protections
under the Americans with Disabilities Act (ADA), protections for students in school through
college under the Rehabilitation Act of 1973, Section 504, unpaid time off work through the
Family Medical Leave (FMLA), etc.. To contact the hotline for free information, call 1-800-622-
0385, or email CFLegal@cff.org.
Vocational Resource: Jewish Family & Career Services (JC&FS) is a non-profit organization
that offers a variety of services to those in the Atlanta Metro area, including Career Services.
Employment services are offered to job seekers often on a sliding scale fee base, and sometimes
for no fee at all. Their approach to career counseling, assessments and job search strategies
provides those looking for a job with tools for defining career direction and conducting
successful job searches, as well as connections to actual jobs. Individualized career counseling
can be extremely beneficial in planning for the unique needs of someone with CF in the workforce.
Copay Assistance:
The TOBI Pod+ program has extended their deadline for copay assistance to December 31st for the
TOBI Podhaler only ($0 copay for one year). TOBI inhaled solution currently offers copay assistance
reducing copays to $10 per 28 day supply. Patient and physician signatures are required for copay
enrollment. *Those with Medicare, Medicaid and/ or Tricare do not qualify. TOBI Copay Enrollment
Pertzye is also offering a $0 copay option per 30 day prescription for up to 12 months. In addition, a
$25 rebate on vitamins and supplements is also available by completing a rebate form with every
Pertzye prescription fill. *Those with Medicare, Medicaid and/ or Tricare do not qualify. Pertzye
Copay Enrollment
The CF Patient Assistance Foundation offers copay assistance for CF medications (pulmozyme, inhaled
TOBI, Cayston, saline and enzymes). This program is most beneficial to those with Medicare,
who have high out of pocket costs for drugs. CFPAF Copay Enrollment
Organization
Emory Adult CF Program
1365 Clifton Road, NE
Suite 4314A
Atlanta, GA 30322
Phone: 404-778-7929
Fax: 404-778-3583
www.emoryhealthcare.org/
cystic-fibrosis
End of Year Reminders
CFF Guidelines for clinical tests:
Chest x-ray every 4 years unless
clinically indicated
DEXA (bone density scan)
every 2 years if normal, once
a year if previously diagnosed
with osteopenia or osteoporosis
Comprehensive labs annually
OGTT (oral glucose tolerance
test) annually if normal the
previous year, or every 6
months with impaired glucose
tolerance
**The end of the calendar year is a
great time to schedule overdue
tests, as many have already met
annual deductibles and out of
pocket maximums for the year!
***If you are overdue for a quarterly
appointment, call 404-778-
7929 to schedule. We’ll let you
know what tests are due.