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After three years of battling bout after bout of pneumonia and bronchitis, Linzi was finally diagnosed with Cystic Fibrosis. While it was shocking and difficult news for her family, the diagnosis also came with some relief, as this sick little girl could now get the treatment she needed to manage the disorder. When Linzi was four, her family moved from Cold Lake to Didsubry and her care was taken over by the CF clinic at the Alberta Children’s Hospital. Linzi would come to the hospital every 2-3 months to see specialists in the clinic. She was on a number of antibiotics to help keep infections out of her lungs and had to keep up with a very strict physio routineto loosen mucus from her lungs.
A few times, Linzi had to come to the hospital outside of regular visits and was admitted due to aggressive bugs attacking her system. When she became very sick from one particularly nasty bug, she had to have a peripherally inserted central catheter (PICC) line put in to help administer her medications. She had the PICC line for six months, which was an especially challenging time, as it prevented her from swimming and other activities. The drugs she was on also caused changes to her physical appearance, including her hair.
About two years ago, Linzi was approved for a new drug called Kalydeco, which only works for certain genetic mutations of CF. While it is not a CF cure and cannot undo damage already done, it corrects the genetic defect at a cellular level. Since being on it, Linzi has undergone an amazing physical and emotional transformation. Before, she was weak and frail with dark circles under her eyes, says Carolyn. Now, Linzi is able to gain weight normally, has gotten much taller and has grown into a beautiful, happy young woman. She remains on a combination of drugs, including Kalydeco, keeps up with her physio and also has a device called a “flooder” that she breathes into, causing her lungs to vibrate and shake loose mucus as a proactive measure.
Linzi now comes to the CF clinic to see the team (which includes a nurse, respirologist, gastroenterologist, pharmacist, dietician, social worker and child life therapist) every three months. The family is so grateful for the wide range of support that is offered to them through the clinic. “You walk in and they treat you like a family member.” The last time Linzi was admitted, she didn’t even want to come home she was enjoying herself so much, adds Carolyn. And following her admission, the team would call personally to see how she was.