Leah's storyLeah was diagnosed with cystic fibrosis in July 2009 at the age of two. Shortly before, Leah had a cousin whose newborn screening required further testing for cystic fibrosis. As we began to read over the symptoms, we were shocked. These symptoms sounded just like Leah.
For the first two years of Leah's life, it seemed like she was constantly sick, requiring nebulized albuterol treatments and even an overnight hospital stay. The doctors were treating her symptoms as if she had asthma, with daily nebulized treatments. However, her body was not responding as expected to the medications. |
Introducing Leah... |
Two weeks before she was diagnosed, as she was in the middle of one of her "asthma" flare-ups that didn't seem to be getting better with her meds, I was on the phone with Leah's allergy and asthma specialist asking him, "Do you think it could be something else?" He would ask me about other symptoms and I would say no, no, no. It didn't seem like we were getting anywhere. Our plan was to make an appointment with a pulmonologist that our pediatrician had referred us to if she was not better by the following week. This was the second time we had gotten a referral to see this pulmonologist. When we received the first referral, Leah had gotten better and we decided not to take our "healthy" child to see a specialist.
During that week, we found out about the newborn screening for Leah's cousin. After we read over the symptoms, we called Leah's doctor to ask if either Leah's newborn screening or chest x-ray would have ruled this out. Our doctor's response was very middle of the road, not too concerned, but thought it would be best to get Leah tested for cystic fibrosis to rule out the possibility.
It was like I already knew the answer. I had no peace about the test. Since one of the symptoms of cystic fibrosis is salty skin, I remember licking her over and over again thinking, "Oh no, she tastes salty."
Within hours of taking the test, the doctor's office called us with Leah's results and directed us to contact the head of the Cystic Fibrosis Care Center to make an appointment for the next day.
When I talked with this new doctor I wanted to know more about her results, hoping they were borderline. He stopped me mid-sentence and clearly stated, "Her test results were abnormal. Leah has cystic fibrosis." He went on to tell me specifics about her test results and the numbers were not anywhere near borderline. There it was. It was official. As I was still in shock and processing what just happened, he answered some of our questions and directed us to the Cystic Fibrosis Foundation website for a place to look that evening.
The next morning we meet with the Cystic Fibrosis Care Center team at Advocate Children's Hospital in Oak Lawn. The doctor sat and talked with us about cystic fibrosis and answered our questions. The crazy thing is that Leah's new CF doctor is the same pulmonologist that she had been referred to twice. Most likely, if we would have taken her in earlier, she would have been diagnosed earlier.
As we met with our CF team over the next couple of months, they taught us more about cystic fibrosis and how to take care of Leah. Almost immediately we began to see improvements in her everyday health. Now that we knew what was causing her symptoms, we were able to treat her properly.
During that week, we found out about the newborn screening for Leah's cousin. After we read over the symptoms, we called Leah's doctor to ask if either Leah's newborn screening or chest x-ray would have ruled this out. Our doctor's response was very middle of the road, not too concerned, but thought it would be best to get Leah tested for cystic fibrosis to rule out the possibility.
It was like I already knew the answer. I had no peace about the test. Since one of the symptoms of cystic fibrosis is salty skin, I remember licking her over and over again thinking, "Oh no, she tastes salty."
Within hours of taking the test, the doctor's office called us with Leah's results and directed us to contact the head of the Cystic Fibrosis Care Center to make an appointment for the next day.
When I talked with this new doctor I wanted to know more about her results, hoping they were borderline. He stopped me mid-sentence and clearly stated, "Her test results were abnormal. Leah has cystic fibrosis." He went on to tell me specifics about her test results and the numbers were not anywhere near borderline. There it was. It was official. As I was still in shock and processing what just happened, he answered some of our questions and directed us to the Cystic Fibrosis Foundation website for a place to look that evening.
The next morning we meet with the Cystic Fibrosis Care Center team at Advocate Children's Hospital in Oak Lawn. The doctor sat and talked with us about cystic fibrosis and answered our questions. The crazy thing is that Leah's new CF doctor is the same pulmonologist that she had been referred to twice. Most likely, if we would have taken her in earlier, she would have been diagnosed earlier.
As we met with our CF team over the next couple of months, they taught us more about cystic fibrosis and how to take care of Leah. Almost immediately we began to see improvements in her everyday health. Now that we knew what was causing her symptoms, we were able to treat her properly.
Leah's CF video (2011) |
CF - In Leah's Own Words (2013) |
Adjusting to our New Normal
During that first appointment, we remember our doctor telling us that many people with CF are now living into their 40s, 50s, and beyond, and he expects Leah to live a full life. For the most part, people with cystic fibrosis can do normal life activities when they are feeling well (go to school, have jobs, play sports…). So much progress has been made recently in CF research and development, there is a lot of hope for a better future for Leah.
We are thankful for that progress, but we also understand that keeping Leah as healthy as possible will have a long-term impact on the length and quality of her life. Every day, we do certain things to help keep Leah healthy.
Looking at Leah you would never know that she is fighting a life-threatening disease. But we do know. And therefore, we are committed to doing our part in keeping her as healthy as can be.
We are thankful for that progress, but we also understand that keeping Leah as healthy as possible will have a long-term impact on the length and quality of her life. Every day, we do certain things to help keep Leah healthy.
- DAILY TREATMENT ROUTINE
Every day, Leah follows a rigorous routine of treatments and medications. She takes six different medicines, which includes both inhaled and nebulized treatments at different times during the day. Twice a day, Leah does her vest treatment - she wears a vest that vibrates and shakes her for 30 minutes each session to help break up the sticky mucus in her lungs in order to keep her lungs clear. She also takes dietary supplements and requires enzymes every time she eats. These are the treatments she does every day to maintain her health. When she is sick, increased treatments and aggressive antibiotic treatments are added to our routine. - INFECTION CONTROL
Avoiding the spread of germs is crucial in order for a person with cystic fibrosis to stay healthy. Cystic fibrosis puts the airways at risk for lung infections. When Leah gets sick, the infection can settle in to her lungs easier because of the thick sticky mucus in her body. As a parent, it makes us want to put her in a bubble to protect her from germs. But we know we can’t live that way. Thankfully, there are effective ways to lessen the risk by following these simple rules:
- Good hand-hygiene - Although germs are everywhere and cannot be avoided, one of the best ways to keep from catching or spreading germs is through effective hand-washing, whether with soap and water or alcohol-based hand gels.
- The six foot rule – staying at least six feet away from someone who is sick. Everyone with CF should avoid unnecessary contact with people who have a cold or any other contagious illness, and should cough and sneeze into a tissue.
- Getting the Flu Shot each year - People with CF can develop more serious cases of the flu, so it is important for Leah to get a flu shot to be immunized against the most prevalent strains.
- NUTRITION
When Leah was diagnosed, we discovered that her pancreas is 98% blocked. Even though her pancreas makes enzymes, the thick mucus in her body blocks them from being released, stopping her body from processing the foods she eats. This broke our heart to realize that she was basically starving. Although she ate a lot, she never seemed satisfied because the thick mucus was getting in the way of proper digestion, causing malabsorption.
To treat this, Leah needs to take pancreatic enzymes every time she eats. She also take dietary supplements, vitamins (specifically made for people with CF) and requires a high-calorie, high-fat diet to compensate for the malabsorption of nutrients. We work closely with our CF dietitian to help Leah gain weight as it is difficult for her, but vital for her health. Good nutrition and growth are important for Leah because good nutrition is linked to healthy lungs.
Looking at Leah you would never know that she is fighting a life-threatening disease. But we do know. And therefore, we are committed to doing our part in keeping her as healthy as can be.
