Local woman shares about her life with cystic fibrosis
For a typical teen, turning 18 means being legally old enough to purchase lottery tickets and having the right to vote in elections. For Amy Stubanas, turning 18 meant reaching a milestone age that many doctors told her she would be lucky to reach.
At just 6 months old, doctors diagnosed Stubanas with cystic fibrosis, a genetic disease that causes persistent lung infections and limits the ability to breathe over time.
According to the Cystic Fibrosis Foundation, the disease causes weakened lung functions due to mucus clogging the airways and trapping germs, like bacteria. This can result in infections, inflammation and respiratory failure. Along with lungs, cystic fibrosis can cause mucus buildup in the pancreas. The buildup prevents the release of digestive enzymes that help the body absorb food and nutrients, resulting in malnutrition.
Every case is different
Every case of cystic fibrosis is different. While Stubanas’ lungs have always been in relatively healthy condition, she has instead faced major problems with her digestive system. Stubanas will see a doctor in Danville every two to three months to ensure that her two current feeding tubes are working properly and that her lung function has not decreased.
With Stubanas’ digestive system, her biggest obstacle is gaining and maintaining a healthy weight. Roughly three years ago, she hit a point where she dropped weight so rapidly that doctors didn’t know what to do other than a feeding tube.
At the time, she was only 80 pounds. Today, with two feeding tubes to get her nutrients, Stubanas has been able to gain and maintain a healthy weight.
A positive turn
Completing around an hour-and-a-half of treatment everyday, Stubanas has reached her highest lung function in the past three years. Prior to her positive rebound, Stubanas’ lung function was at a constant decrease to where she was losing hope and feared reaching the point of needing a double lung transplant.
“I am at a lung function that I haven’t seen in three years,” Stubanas said. “We still don’t know how that one happened, but it is alright … we will take it. So when I saw that number, I was excited to see that I could rebound and that is was possible to see positive numbers. The doctors told me they have never seen someone rebound so much without a double lung transplant.”
A changing perspective
With a changed perspective, Stubanas found the motivation to be persistent and diligent about taking her medication – a drive she had previously lost.
While this motivation was lost for a short period of time, it has been instilled in Stubanas since third grade when she began completing her treatments on her own.
Stubanas began doing her own IV work after her first hospitalization. A nurse risked her license by helping Stubanas to learn how to do her own IV medications.
Halfway through her 11th year, Stubanas had her first major surgery due to an increased level of acid reflux taking a toll on her lung function.
Due to multiple hospitalizations, according to Stubanas, her veins were shot and were no longer able to have a PICC line put in for medications. As a result, she had her first medi-port put in to help with medications and has completed her own needle changes and medications ever since.
Another major part of maintaining healthy lungs is exercise, and as a result Stubanas parents signed her up for soccer in elementary school.
Despite having three siblings in the world of soccer, Stubanas’ career on the field was short lived seeing that she picked flowers on the field and earned the nickname “twinkle toes,” because of her dancing on the field.
Luckily, the dancing carried into Diane Gailit’s Turning Pointe dance studio.
“I started tap dance lessons with Diane when I was eight, and I never looked back,” Stubanas said. “It has kept me super healthy and, in a lot of ways, dance saved my life. Without it, I don’t know where I would be.”
Stubanas explained that exercise, whether it’s soccer or dance, acts similarly to the vests cystic fibrosis patients use to shake up the mucus in their lungs to avoid infection. According to Stubanas, she believes without dance she could have needed a double lung transplant like many other cystic fibrosis patients she knows.
Long-time friend of over 30 years, and now 15-year owner of Turning Pointe School of Ballet, Jackie Gailit proudly spoke of Amy’s journey with dance and character – even on the hard days.
“You would never know Amy was sick,” Gailit said. “I knew she had CF, but she always seemed upbeat. There was a change-over with my mom giving me the studio, so I saw Amy through her high school years and when she went to college. Amy has been very strong. Even on her sick weeks, she reaches out for videos and practices the combos in her hospital room.”
Stubanas’ strength alone has gotten her through many highs and lows of CF and of life. One high that she gets to share is the birth of her now 6-year old daughter Kaia.
“Kaia really is like our miracle child because I was not supposed to have her,” Stubanas said.
For many women living with CF, getting pregnant takes many trials of fertility medications. Stubanas completed three rounds before getting pregnant with Kaia. Stubanas was fortunate enough to work for 32 weeks, and then had work cut down to half work weeks.
At 36 weeks, Stubanas went into her high-risk specialist’s office, exclaiming how hard it was for her to breathe with her soon-to-be daughter pushing on her lungs that already have a lower function. Not long after, Stubanas went through 36 hours of natural labor and her miracle baby was in the world.
Following the birth of Kaia, doctors said if they wanted to have another child, Stubanas and her husband, Wade, would need to move closer to family. For them, at the time, the best option was Williamsport because many family members lived there. Despite many of their family members moving out of the city, Stubanas and her husband remained and found a village of their own to help with Kaia during Stubana’s hospitalizations.
“We have fabulous friends who have basically adopted Kaia like another daughter,” Stubanas said. “Whenever I get sick or I am in hospital they offer to take Kaia or provide meals. The only way we can do it is with these people’s help.”
‘No one needed to know’
Married at 21 years old, and pregnant three years later, Stubanas has always been aware of the life expectancy and has shifted her outlook on life for each.
Turning 30 alone was another huge milestone Stubanas did not expect to experience when first diagnosed.
Stubanas had to grow up quickly and get life in before it was possibly taken away. She slowly grew okay with people knowing more about her journey.
“For the longest time, I kept it a secret,” Stubanas said. “I did not want anyone to know. I grew up in school, especially in public school, and was the sick kid. It caused me to withdraw into myself. No one needed to know. No one needed to see it. For the longest time, I did not tell anyone.”
But something along the way changed. “Not until recently, I realized how much people do need to know even if it is not my story,” Stubanas said. “Just the impact of it. It is not a short term childhood disease anymore … it is becoming more of an adult world and will be around longer.”
According to Stubanas, as Hollywood and other media forms continue to bring light to CF, it is important to her for people to be aware of the disease in the most accurate way possible.
“I think the biggest thing is that there are no signs and symptoms of it. So, not a lot of people understand the work and energy having it takes,” Stubanas said. “I hope that people have an awareness that when we wear our masks, it is not because we are contagious, but because we are protecting ourselves … (I hope people are) just trying to be more aware of what different people are going through. We might be hooked up to a feeding bag, but that is what keeps us healthy. We might wear a mask in public, but that is what keeps us healthy. Just being aware and less judgmental of what keeps us going.”