Cough it Up, Spit it Out!
Spring 2012
Volume IX, Issue 1
Pediatric Pulmonary Center CF Updates
A Division of Children’s Hospital of Greenville Hospital System (864) 454-5530
Special Interest
Articles:
• New office is
beautiful and we
are all together,
finally!
• Recipe corner
has high calorie
snack.
We are together and LOVING it!
The Division of Pediatric
Pulmonary has finally
joined together under one
beautiful roof at the
Patewood Medical
Campus.
We have been located on
the 3rd floor of Patewood
building A, in suite 300
since November. We are
all on the hospital
computer network and this
has made the ability to
review labs, x-rays and
other provider’s notes
really easy. The transition
• Kalydeco
approved
Individual
Highlights:
Team members 2
Child Life
3
Kalydeco
4
Registry updates5
Angels with Roses
6
from paper charts to
computerized charts is still
in process until we have
seen each patient at our
new office at least once.
We have lots to offer at
our new clinic. Katie
Stogsdill, our registered
dietician, Amy Bowers,
our social worker, and
Mitzi Privette, our child life
specialist are available at
every Tuesday morning
CF clinic. Our ability to
have your child assessed
by these specialists, in
addition to our providers,
RT’s, and nurses, will help
the CF Registry
immensely. The CF
Registry works to find
trends and advance the
care of CF by accessing
>20,000 patients across
the CF centers noted on
the CF website. It allows
us to assess trends,
research options, and
provide the most up to
date care for your child. If
you are not participating,
please consider it.
Great Strides on May 19, 2012 at Heritage Park!
Great Strides is the Cystic
Fibrosis Foundation’s
largest fundraising event.
This event brings together
families, friends,
coworkers, and
businesses to all work for
the common goal of
finding a cure for Cystic
Fibrosis.
team this year. My kids
and I are looking forward
to walking with you, your
family and friends!
raise money to find the
cure.
We have had some real
advances in molecular
science and there is more
to come. Please consider
your time over the next
several weeks. The
internet, Facebook,
Twitter and emails are all
great ways to raise
money.
I want
to mention
Great Strides is May
19,
2012 aatrealHeritage Park!!!!
Our CFF representative is
Rachel McQueen and her
office is in Mt. Pleasant,
near Charleston. She can
be reached at 1-866-3242242 or by email at
macqueen@cff.org.
Our division has our own
spotlight for our center this
year. The Great Strides
brochures that are
available presently have a
list on the back of the top
ten fundraising families.
Our center claims 4 of
those spots with: Georgia
Caroline’s Crew, Gracie’s
Crew, Ivy’s League and
Piper’s Posse! We are so
proud of our top teams
and all of our families who
can do what they can to
Looking forward to seeing
as many of our CF Family
as possible as we come
together to battle this
disease.
Cough it Up, Spit it Out!
Page 2 of 6
New Team members for you to meet!
Candace Gaffney is the
smiling face you see as
you get off the elevator.
She is a 2007 graduate of
Limestone College and
holds a B.S. in Liberal
Studies. She has been
our lead physician
practice specialist and
really enjoys getting to
know our families.
Amy Young is one of our
floating physician practice
specialists. She is the
mother of 2 girls, aged 13
and 9 and is married to
her high school
sweetheart. She attended
USC and has a B.S. in
Business Administration.
Amy’s family are soccer &
lake lovin’ and, if they
aren’t on the pitch they
are at their lake home in
Hartwell.
Furman with a BA in Arts
and Political Science.
She is well-traveled as the
family has moved across
the Southeast as she
homeschooled her 2
children. She has been in
healthcare many years
and with GHS since 2011.
Julie Barnett is another
floating physician practice
specialist and you might
see her coming or going.
She is a graduate of
Medical Assistants here to serve you, too!
Marsha Taylor is one of
our Medical Assistants.
She is the mother of a
beautiful 6 year old girl.
She holds a paralegal
degree from Greenville
Tech and a Certificate
from Virginia College.
She was born in VA, but
spent several years in
Germany as her dad was
in the military. The family
moved to SC when she
was 8. She worked as a
legal assistant while
Your child’s nutrition is
linked to how well their
lungs will function. Start
now to amplify your
child’s diet to result in
greater lung health.
attending Virginia College
as she was being called to
the medical field. She has
been a member of our
team for a year.
Mary Xiong is our other
medical assistant. She is
a 28 year old who was
raised in California. She
moved to the Carolinas in
1998. She was married in
2009 and moved to the
Greenville area. She
worked as a CNA after
high school and then
opted to further her
career. She is a graduate
of ECPI University with an
Associate degree in their
Medical Assistant
program. She is working
with us full-time and is
also working part-time as
a certified pharmacy
technician. Mary plans on
enrolling in a program in
August to finish prerequisites to enter a
PharmD program.
Recipe Corner: Becky’s Super Chocolate Shake
Preparation time: 5 min
1 snack pack pudding
Cooking time: NONE
1 envelope hot chocolate
Serves: 1
Directions:
Ingredients:
Put into a blender and mix
until smooth and creamy
8 oz chocolate milk
1 large scoop chocolate
ice cream
Nutrition Facts
Calories:
390
Total fat:
14 g
Cholesterol:
35 mg
Total carb:
60 g
Dietary fiber:
3g
Protein:
9g
Page 3 of 6
Cough it Up, Spit Out!
Lots of help for you in our Front office!
Julie Wallace is our
practice manager and she
helps to keep everything
running smoothly so that
your experience here is
both helpful and pleasant.
Julie has been with the
hospital for over 20 years.
Julie manages the budget
and is careful that all the
i’s are dotted and the t’s
are crossed. Julie’s pride
and joy are her family.
She and her husband are
the proud parents of 3
boys, Luke, Jacob, and
Matthew.
Diane Foster is our Peds
Pulmonary Coordinator.
Diane is part of the
transition team that moved
from Children’s
Respiratory Center to the
Division of Pediatric
Pulmonology. She has
been working with the CF
Center for the last 11
years and is a guru when it
comes to insurance. Diane
holds a BS in Sociology
from UNC at Wilmington.
She has 2 children,
Brooke and Zach, who are
a large source of joy in her
life. Diane is somewhat
hidden now, as her office
is behind the front desk,
but if you need her
assistance, just ask!
Lisa Huefner has served
as an Administrative
Assistant in Peds
Pulmonary since January
of 2011. Her role includes
check-out desk, scanning,
and other office duties.
Lisa was first associated
with Greenville Hospital
System as a Medical
Transcriptionist for various
pediatric specialties,
initially as a subcontractor
in 1999 and then as a fulltime employee in 2005.
She enjoys spending time
with her husband and 6
children, traveling, trying
new recipes, and
couponing.
Child Life is also here to serve your child
Mitzi Privette is our Child
Life Specialist. She
serves our department in
addition to the entire
outpatient center. She
has been a child life
specialist for almost 20
years with 15 of those
years at Children’s
Hospital. She holds a
Masters in Education and
BS in Psychology. She
did her internship at Johns
Hopkins Medical Center.
Child Life helps children
and families cope with
stress in the hospital or
medical setting. Child Life
Specialists use medical
explanations, play and
teaching materials to help
ease anxiety and prepare
children and families for
doctor’s visits, hospital
stays, surgery, and other
procedures. Her role is to
help our patients and
families cope with their
doctor’s visit along with
any procedures that may
happen during their visit.
She helps to prepare
children for procedures by
using preparation and
distraction for coping.
She also helps with
hospital admissions,
surgeries or
developmental concern in
children. Mitzi also has
programs to help siblings.
Sibling stress is a known
problem in families with a
child with chronic disease.
If your child is anxious
about their visits to the
outpatient center, or
having pokes (labs, IV’s,
accessing port) for
procedures, being
admitted to the hospital, or
if you have general
questions ask for a
consult with Mitzi.
“. I help to prepare
children for procedures
by using preparation
and distraction for
coping.”
Cough it Up, Spit it Out!
Page 4 of 6
“A Day in the Life,” by Dr. E’s former patient, Tina
Sometimes I feel like a
traveling circus act.
Please consider sharing
with our CF Center any
writing you have done
to cope with your CF
and we will try to put it
in the next newsletter.”
Come one! Come all!
Watch me get tangled in
my props. My purse, my
oxygen—oh this stupid
hose! Hopefully nothing
drops.
But don’t listen to my
mouth. Sometimes a day
in CFLand is not for
children’s ears.
My day was going finereally, ‘til my tank ran
empty while at the vet and
I parked my car and
hastily took my foot off the
clutch while still in gear.
I’m sorry kitty. I didn’t do
that on purpose. Ok, out
we go! More oxygen is
just one flight up. Hey
there! Howya doin’?!
Gimme 5 minutes and I’ll
walk my favorite pup.
My mouth lied. A
treatment is what I need.
Then we will go for a walkthe dog, the cat, my tank
and me…
Funny—the only one on a
leash is me.
Research Updates
Pulmozyme continues to
show that use of the drug
slows the decline of
pulmonary function.
Pulmozyme works by
basically cutting the
molecules that cause the
mucus to be so thick and
allows it to be expelled. It
is given with a nebulizer
machine and dosing is
recommended first thing in
the morning if possible.
Eradication of
Pseudomonas has
benefits A Canadian
study looked at the cost
benefit associated with
clearing Pseudomonas
from a CF patients lungs.
There are varying
protocols that can
accomplish this and more
studies need to be done.
However, this study
showed a decline in
hospitalization and
antipseudomonal
antibiotic costs.
Kalydeco is now available!
“Kalydeco is improving
quality of life and Vertex
is working to find similar
drugs to treat other
genotypes.”
The medication developed by
Vertex pharmaceuticals is
now available. This
medication is only available
to treat a certain genotype of
Cystic Fibrosis, the G551D.
This medication alters the
way the CFTR channel
works in those people who
carry the G551D gene.
The CFTR channel has a
variety of defects
depending on the
genotype of the person.
Kalydeco has been shown
to improve lung function,
decrease exacerbation,
improve weight gain and
increase quality of life.
The Vertex company
continues to use the
technology it used to
develop Kalydeco, to try to
find a similar type of
product to treat those
patients with the ^F508
gene, which is the most
common gene.
There are presently some
drugs in the pipeline now
that are in Phase 2a trials.
This is still considered
very new and only time
will tell if they will be
effective.
Page 5 of 6
Cough it Up, Spit Out!
CF Registry Report, Annual Data 2010
The registry publishes
annual data on a yearly
basis and it is always a
year behind, as each
year’s data must be in by
the following February.
The registry compiles data
from more than 110 CF
care centers, for analysis
of more than 26,000
people.
The data this year
continues to show that
overall health is improving
and presently the median
predicted age of survival
is 38.3 years, in 1986 it
was 27. Advances are
making a difference!
Families need to realize
that the research and
trends that are observed
occur because of YOUR
participation in the registry
and with your CF Team.
We need to see your child
at a minimum of 4 times a
year, obtain at least
quarterly sputum/throat
cultures, perform lung
function if at least 6 years
old, obtain annual labs
and chest x-rays. These
are all a part of our
accreditation, but more
importantly allow us to
assess your child and
treat any problems early.
Nutritional failure is one of
the areas known to
adversely affect lung
function. Katie Stogsdill
our dietician and Amy
Bowers our social worker
are in clinic every
Tuesday morning to
assess your child if
indicated. We are all
working very hard to take
the best care of your child,
but it is the support of
parents that make the
difference. The full CF
registry report can be
viewed on the CF Website
at www.cff.org. If you
have any questions about
the registry please discuss
it with us at your next visit.
CFF web address: www.cff.org.
CF Mutation Database- CFTR2 to be available soon
This project has come
together with the help of
the CFF, Vertex
pharmaceuticals, Johns
Hopkins University,
Hospital for Sick Children
in Toronto and the Cystic
Fibrosis Centre in Verona,
Italy. The goal is to
provide information about
the various CF gene
mutations to doctors,
nurse practitioners,
researchers, people with
CF and their families, as
well as the general public.
This site will contain
information on nearly
40,000 CF patients around
the world. Once it is
launched, it will be
available on the CF
Foundation website,
www.cff.org. There will be
2 sections of information.
One set will be for the
general public and the
other section for the
medical community. The
medical community
section will be available to
everyone.
This site will be obtaining
opinions by the CF
community to make this
site as helpful as possible.
The information about this
site was presented at the
North American Cystic
Fibrosis Conference in
Anaheim this past
November.
To learn more about this
you may visit CFTR2 on
Facebook
(www.facebook.com/page
s/Cftr2/105150012908089
?sk=info).
.
“CFTR2 will provide
information about
various CF mutations to
the CF community.”
Angels with Roses, Birthday Wishes!
Division of Peds Pulmonary
200 Patewood Dr., Ste. A300
Greenville, SC 29615
PHONE:
(864) 454-5530
FAX:
(864) 241-9246
Emily S.
2/17
Arey’a L.
2/17
Jessica D. 2/5
Logan T. 1/26
Camryn P. 2/20
Izzy C.
3/13
Nathan P. 3/22
Karlee E. 6/30
Kenneth H. 5/26
Brynlee G. 4/14
Emilee M. 3/12
Sorcha G. 6/28
Drew R. 2/11
CheyanneP.2/12
Amber A. 4/7
Kyleigh C. 1/11
Nicholas C.6/14
Emily S. 3/29
Cameron B. 4/4
Hunter C. 3/7
Brianna H. 3/4
Heather B. 1/21
Yael B-T.
2/26
Ian S.
6/1
Aaylivia G. 6/10
Owen G.
1/20
Benjamin K. 2/18
About Our Organization…
We’re on the Web!
See us under Children’s Hospital
at:
www.ghs.org
We’re also on FACEBOOK
www.facebook.com/GHSChildrens
please visit and LIKE us
Dr. Okan Elidemir is the
Medical director of the
Division of Pediatric
Pulmonary of the
Greenville Hospital
System’s Children’s
Hospital. Our vision is to
transform health care for
the benefit of the people
and the communities we
serve. Our mission is to
heal compassionately,
teach innovatively and
improve constantly. The
core values held by our
program are compassion,
respect, caring, honesty,
integrity and trust. We
live our values through
open communication,
forward thinking,
creativity, continually
striving to improve,
responsiveness, a
willingness to change,
education, research and
clinical quality.
Our Cystic Fibrosis center
is affiliated with Duke
University Medical
Center. Our CF Center
Director, Dr. Jane Gwinn
and our Associate Center
Director, Dr. Steven
Snodgrass are continually
striving to maintain the high
level of care we deliver to
our Cystic Fibrosis families.
We have physicians from
Pediatric Gastroenterology,
Pediatric Endocrinology, and
Pediatric Infectious Disease
that participate in our
Continuous Quality
Improvement. The
Children’s Hospital is here to
support our CF families to
the best of our abilities.
Hazel Hill has made the BIG TIME!
Our own Miss Hazel Hill of Easley is the Children’s Hospital
spokesperson for the Children’s Hospital Awareness campaign
running thru June 30. Hazel was diagnosed with Cystic Fibrosis
in 2003 and she has never let CF get in the way of anything she
wanted to accomplish. You can hear Hazel speaking about the
Children’s Hospital with Dr. Bill Schmidt, Medical Director,
Children’s Hospital and Chairman, Department of Pediatrics, on
various radio stations and her spot is to be uploaded to
Facebook soon. Hazel’s story is a wonderful way to educate
the community about Cystic Fibrosis, especially with the Great
Strides campaign happening in May. We are all so proud of
little Miss Hazel, you go girl!!!
Editor: Lisa A. DuBose C-FNP
Newsletter is made possible by a grant
from Aptalis pharmaceuticals