Spring 2020 Issue 2

Cough it Up, Spit it Out! Pediatric Pulmonology CF Center Updates

A Division of Prisma Health Children’s Hospital-Upstate (864) 454-5530

This year graduation has certainly had some serious hiccups due to the COVID 19 pandemic. Our local high schools continue to amaze me with their creative ways of celebrating the seniors at their schools. We obviously are limited in this context to fully celebrate our seniors, especially given my limited ability to publish images given that our graduates are rather private people.

Our first graduate is Nicholas C. He ran cross country and track at his high school. He is

We have some Graduates to Celebrate!!

Special Interest Articles:

• Covid 19

Healthwell resources.

• SC CFF

fundraising & awareness events!

• COVID 19 and

CFF

Individual Highlights:

Mental Health 2

Recipe Corner 3

Inside Story 4

Great Strides dates

5

Birthdays 6

We continue to learn more about the benefits of Trikafta over the 6 months since its approval in late October.

CF Registry and our care team listservs are literally “blowing up” with conversations regarding UNEXPECTED pregnancies.

The cervical mucus in women with CF has historically been very thick and thus would often

make fertilization of the egg difficult to achieve. The improvements noted with Trikafta includes thinning of that cervical mucus and thus allows fertilization to occur.

We try to counsel our teenagers and young adults about this issue during clinic.

We work with a group of adolescent & adult gynecologists, urologists and a genetics counselor

graduating from a school in Greenville County and will be attending Clemson University this fall. Nicholas plans to major in computer engineering.

He is followed by Miss Krysta H. Krysta was involved with marching band throughout her high school career. She attended a high school in Pickens County. Krysta plans to attend Anderson University in the fall and major in biology.

Lastly, we have Deuce W. who is graduating from a high school in Spartanburg County. Deuce has always loved

the outdoors and he is very involved with hunting and fishing. He is planning on attending Spartanburg Tech with the goal of becoming a boat mechanic.

Please keep all of our graduates in your thoughts and prayers as they take their next step in their life journeys.

Trikafta and Unexpected Pregnancies who are more than happy

to speak to your children or to our adult patients directly.

Please be aware of this added benefit of Trikafta and speak to your children, your significant other or your spouse so that you can adequately prepare for the increased possibility of a pregnancy.

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“Keeping schedules consistent allows children a sense of security.”

Are things a little crazy in your home right now in light of how the COVID-19 pandemic has drastically changed your routines? You are not alone – we are all trying to navigate this “new normal.” I have a few tried and true tips that I’m sharing below in hopes that it can give you a few ideas to try in your home. • Keep your family’s

schedule consistent when it comes to bedtimes, meals, treatments and exercise. Children thrive on routine and gain security when they know what to expect.

• Take time to do things as a family that bring you joy and connection. Some ideas include watching movies, listening to music, reading, playing games, playing outside, or going for a walk.

• Point out the helpers as Mr. Rogers said “When I was a boy and I would see scary things in the news my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’”

Mental Health Minute by Christy Clarke, LMSW • Have your children

participate in distance learning opportunities. Many places likes zoos and museums are doing free virtual field trips.

• Recognize that feelings such as loneliness, boredom, fear of contracting disease, anxiety, stress and panic are all normal reactions to this type of situation. Allow yourself and your child to have these feelings, talk about them and then think of things to do (see list above) to help you move forward.

• Seek counseling or medication for anxiety/depression if the feelings become too burdensome. Many mental health professionals are offering virtual visits as an option.

• Choose gratitude during this time. Start by thinking of just one positive thing in your day. Maybe discuss with your children what you’re thankful for. Is it the beautiful spring weather or the family dinners you’ve

been able to have more often?

• Stay connected to family and friends. Use face time and phone calls to talk to your loved ones. Allow your children to call, face time or write letters to their friends, classmates and teachers.

• You are a role model for your children. How you handle this stressful situation can affect how your children manage their worries.

• Remember YOU’VE GOT THIS! After all, CF patients and their families have been practicing the “6 feet apart” for years! We are here for you so call us anytime with questions or concerns.

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COVID-19 Ancillary Fund is providing assistance with costs associated with delivered food, medication, diagnostics, transportation and telehealth as a result of COVID-19 risk or incidence. CF is an acceptable diagnosis due to being at high risk. This fund will reimburse you up to $250 for grocery delivery or grocery curb side pick-up. COVID-19 Insurance Premium Payment Assistance Fund is a limited time assistance

Healthwell COVID 19 Resources as per Christy Clarke, LMSW

Ingredients: 1 cup frozen strawberries 2 oz. grapefruit juice 2 oz. pineapple juice 2 oz. orange juice 1 tsp sugar 1 fresh strawberry for garnish Directions: Mix all ingredients except one strawberry in a blender. Pour into a tall glass. Place the fresh strawberry on the rim of the glass.

ENJOY!!!

Recipe Corner: Strawberry Summer Cooler

with employee portion of insurance premium costs related to COVID-19 furloughs and COBRA Premium costs related to COVID-19 layoffs/unemployment. Both of these funds are accepting phone applications only. Please note there are income guidelines (500% of poverty level which would amount to $128,750 for a family of 4). Call 800-675-8416 to enroll.

Nutrition Information: Serving size: 12 oz Calories/serving: 352 Protein (gm): 2 Fat (gm): 5 Carbohydrate (gm): 92

This recipe looked like fun not only as a drink, but maybe even as a Popsicle or as ice cubes that you could then place in lemonade. Thinking you could make this into an all-out slushie if you wanted a really cool treat and just add some ice cubes.

What is nice about this drink, is the children could help put it together and we all know how much our kids love to “help” in the kitchen! I will leave adult versions of this drink to your own devices!

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The world can learn a lot from those of us who have been caring for a loved one with Cystic Fibrosis. We are the ones who made 6 feet apart, worthy of a movie, RIGHT!!!!

The current COVID 19 pandemic continues to infect people across the globe, but WE are winning the fight. WE already know how to use gloves and not touch our entire bodies in the process! We already know how to wear a mask and not touch every part of our face in the process! We already know to limit exposure of our loved ones to those who are sick!

COVID 19 Precautions & Cystic Fibrosis

Sean H. 4/23

Emily C. 3/03

Sorcha G. 6/28

Marnisha M. 3/04

Garrison W. 7/11

Nicholas C. 6/14

Emily S. 3/29

Cameron B. 4/04

Brianna H. 3/04

Lily W. 3/15

Anslee P. 7/18

Braydon A. 7/08

Alyson N. 7/26

Birthday Bonanza for March thru July!

So what don’t we know?

• When will this end

• When can I go to dance class

• Will I be able to go to my college campus

• When can I feel safe at work

• Will this come back again and again

• When can we come together as a CF Family to walk, run, bike, shoot or fish for a cure

• Will there be a vaccine

I unfortunately do not have the answers to these questions. I do know that the greatest medical minds of our world are working on the answers. We have an amazing pipeline of knowledge channeled to us by the Cystic Fibrosis Foundation. If you have never joined the CF Foundation NOW is the time. They are here to support YOU. You do not have to fundraise if you do not want to, that is not their sole mission. Their mission is to find the cure and support our families along the way. Consider reaching out and let them help you.

Izabella C. 3/13

Ava W. 7/21

Nathan P. 3/22

Karlee E. 6/30

Moranda Pierce 6/17

Brynlee G. 4/14

Noah T. 7/10

Emilee M. 3/12

JR L. 7/07

Aaylivia G. 6/10

Adam S. 5/10

Lauren S. 7/25

Karson C. 3/01

Miriam H. 7/10

George W. 7/14

Raelyn D. 3/28

Ava W. 5/12

Madison M. 4/26

Cameron D. 4/02

Adaley C. 5/26

Miles P. 7/10

Konnor W. 4/19

Gianna F. 5/16

Khlyha L. 5/13

Jocelyn S. 4/13

Marley P. 7/24

You can reach the SC CFF: Megan Onysko: monysko@cff.org 843-352-6436 Jamie Bierdz: jbierdz@cff.org 843-352-6440 Or go to www.cff.org/sc

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Juliett F. 4/19

Joanne M. 5/24

Shannon E. 7/01

Lane N. 5/23

Josephine L. 7/01

Jacob F. 3/23

Malakai A. 4/21

We just want to wish all of our birthday peeps are

Dr. Steven Snodgrass is the Medical Director of the Division of Pulmonology of Prisma Health Children’s Hospital-Upstate and is also our CF Center director. Our purpose:

Inspire health. Serve with compassion. Be the difference.

About Our Organization…

Division of Pediatric Pulmonology

200 Patewood Dr. Suite A 300

Greenville, SC 29615

Phone: (864) 454-5530

Fax:

(864) 241-9246

EDITOR: LISA A. DUBOSE, NP PRISMA HEALTH CHILDREN’S HOSPITAL-UPSTATE PEDIATRIC PULMONOLOGY CYSTIC FIBROSIS CENTER

We’re on the Web! See us under:

Children’s Hospital at:

www.ghs.org

We’re also on FACEBOOK So check us out and “like us” www.facebook.com/GHSChildrens

beginning of summer to everyone. Please remember we are here if you need us! We are a phone call, a Mychart message, a virtual or in person visit away. It is our pleasure and privilege to care for you and your loved ones!

very happy and healthy year. We are so looking forward to seeing all of our CF patients and their family members in the upcoming year, once Covid 19 finally hits the road or the health officials deem it safe for our CF patients to return to a more “normal” way of life. Happy end of school and

Our CF center is a CORE CF Center accredited by the National CF Foundation. We are continually striving to maintain the high level of care we deliver to our CF families. We have multiple subspecialists involved in our care center. Prisma Health

Children’s Hospital-Upstate is here to support our CF families to the best of our abilities.

L

Birthday Bonanza continued…..