A Day in the Life of Cystic Fibrosis

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My daughter, Layla Jean, has Cystic Fibrosis (CF). Since May is Cystic Fibrosis Awareness Month, I thought it would be a great opportunity to share about this disease and give a little glimpse into our day with CF.

supportBut first, a little info about Cystic Fibrosis (CF). CF is a life-threatening genetic disease that affects 30,000 children and adults in the United States and 70,000 people worldwide. It causes debilitating lung infections that lead to premature death. In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • Clogs the lungs and leads to life-threatening lung infections.
  • Obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.

More than 10 million Americans are symptomless carriers of the CF gene. For more information about CF, go to www.CFF.org.

Life with CF can look like absolutely nothing is wrong. Layla is one of the most joy-filled little gals you will ever meet living her life in a never-ending Disney movie, singing and dancing her way through her day. Behind the scenes, though, you will see a few differences in our day than in your typical daily routine.

  • Breathing Treatments – Layla receives a minimum of two breathing treatments a day to keep her lungs clear. Sometimes we will do more depending the day and season. (Ugh, spring has all but done us in!) The flowers are beautiful, but the pollen has my gal in coughing fits throughout the night.
  • Enzymes – With the hindered ability to break down food, Layla is required to take pancreatic enzymes that do the job for her. She has been taking these pills since day two of her life! Now she is a pro popping four pills before every meal and two before every snack. My gracious, the enzymes alone have me more organized than ever before because we don’t eat every meal in one place so I have to be sure we are all set and ready for any food that goes in that little belly of hers.
  • Chest Percussion Therapy (CPT) – Twice a day I have to pound on my little gal. WHAT?! CPT helps those with CF breathe with less difficulty and stay healthy by using percussion to loosen thick, sticky mucus in the lungs so it can be removed by coughing. When Layla’s doctor had me do it for the first time, she got onto me because I was being to delicate! At this point in the game, Layla calls it her “pats,” and she turns around and makes sure my lungs are healthy too by giving me pats. 🙂
  • Doctor’s Visits – To stay on top of the disease, we head over to Cook Children’s Pulmonary Clinic quarterly to check-in and make sure all is well. If it isn’t well, we do what we need to do to fix it. Three out of four visits are easy as pie; the fourth visit is our yearly work-up, which is a little more daunting with chest x-rays, blood work, and the whole shebang. Good thing the offices play Disney Junior the whole time! Doc McStuffins to the rescue!
  • Hospital Stays – With CF you may have hospital stays for a variety of reasons from cold, flu or infections to something as serious as lung transplants, which are very common in CF patients when the lungs develop severe lung disease. Praise God we have only had a couple of hospital stays in Layla’s four years! Praying we stay as far away from hospital stays as possible!

Every day I am learning more about this disease, and every day I am thankful for those who are fighting beside me. Major shout out to our care team at Cook Children’s in Fort Worth: Y’all encourage us through all of the highs and lows. I am so thankful you are in my backyard! Also, a huge shout out to the Fort Worth Chapter of the Cystic Fibrosis Foundation:  You are a connector, a provider of powerful information, an encourager, and just an awesome resource for those of us in the fight!

at cooksIf you are interested in helping with the fight against Cystic Fibrosis and the search to find a cure, there are many events happening throughout the metroplex that support the Cystic Fibrosis Foundation.  Here are a few:

May 9th: Homegrown Festival. Dallas music festival with $10 your ticket price going to the North Texas Chapter of the Cystic Fibrosis Foundation.  Just remember to use this code when you purchase your ticket…UVHG6…The Old 97’s will be there!!

May 17th: Great Strides, which is a family fun, healthy 5k walk at Quick Trip Park in Grand Prairie. The Great Strides walk helps us keep the momentum going to find a cure!

August 15th: CF Climb is an exhilarating stair climbing/fund raising event where we all climb to the top of the Pier One building in Fort Worth.

Oct 14th: 65 Roses Wine and Food Extravaganza . . . oh my, am I looking forward to this event. An evening under the stars savoring Texas cuisine from some of Fort Worth’s top chefs? Count me in!

Nov 7thBand of Roses is the ultimate tailgate party paired with some of your favorite Texas Country artists. Yeehaw! We’re in Fort Worth for cryin’ out loud!

Here’s to finding a cure and adding tomorrows to those with Cystic Fibrosis!

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Joanna
Joanna loves doing life in Fort Worth! She has two cutie pie kiddos, Rhett, 5 and Layla, 4. She works full time in marketing and loves to run. Let’s be real . . . she likes to run because she loves donuts! She and her family are in a fight to find a cure for Cystic Fibrosis because Layla has the disease. They could not be more in love with their team of doctors, nurses, and dietitians at Cook Childrens. Joanna says she tries to find joy in each day even though life gets absolutely crazy at times with a full-time job, two super fun and active kids, and doing treatments with Layla daily. She can many times be found in her kitchen trying out a new recipe from Cooking Light Magazine or Pioneer Woman. (Photo courtesy of: Beyond the Blue Studios).

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