When cystic fibrosis interrupts the joy of life

My daughter, Jasmine, went to her first school dance when she was 16. It was the kind of night she had dreamed about and worked hard to reach, despite dealing with cystic fibrosis.

She had prepared carefully, making sure her bronchial drainage treatments were done, her nebulizer was packed, and her pancreatic enzymes were tucked into her purse alongside her medications. She danced, laughed, and came home glowing, telling me every detail.

A week later, things had changed. Jasmine started to feel tired and blamed it first on staying out late. But the fatigue lingered, and she soon developed a cough that wouldn’t go away. I watched her carefully, hoping it was just a cold, but deep down I knew how quickly things could turn. Her cough grew worse each day, rough and persistent, sometimes leaving her breathless and clutching her chest.

She tried to keep up her routine and sat at the kitchen table every morning taking her pancreatic enzymes before breakfast and her regular medications. She never missed her bronchial drainage treatments, even when she was exhausted, and she used her nebulizer faithfully. But the treatments seemed to help less and less, and at night, I listened through her door, counting the pattern of her coughs and the silences in between.

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A long hospital stay

The next morning, after another restless night, I found Jasmine sitting on the edge of her bed, pale and shivering, her breathing shallow. She looked up at me and said, “Dad, I think we need to go.” I gathered her medications, her enzymes, her chart of treatments, and drove her to the emergency room, trying not to let her see how worried I was.

The ER was busy, but as soon as the nurse heard “cystic fibrosis,” Jasmine was seen quickly. The doctors listened to her chest, ordered an X-ray, and started oxygen. I sat by her side and started answering their questions about her bronchial drainage treatments and medications. Jasmine was used to doctors, but this time she looked scared.

After a few tense hours and tests, the doctor came in. He explained that Jasmine had a bronchial spasm because the lower lobe of her left lung had partially collapsed. The words hit me like a wave, but Jasmine just nodded, asking what would happen next. They admitted her immediately and started her on stronger nebulizer treatments and antibiotics to help open her airways and fight infection. She would need to stay in the hospital for at least two weeks.

The first night was the hardest. Machines beeped softly in the background, and nurses came in every hour to check her oxygen and give her medications. She was exhausted, but she tried to smile at me. I stayed by her side, reading to her or just holding her hand as she drifted in and out of sleep.

Each day, Jasmine endured more bronchial drainage treatments, sometimes four or five before lunch. Respiratory therapists came and went, adjusting her nebulizer, and encouraging her to keep fighting. She took her pancreatic enzymes before every meal, her appetite never quite matching her determination.

Moments of hope

There were moments when she was frustrated and angry that her body would betray her so quickly after such a happy night. But there were also moments of hope. She talked about the dance, the boy she had met, and how she wanted to go back to school as soon as she could.

I watched her closely, learning the rhythms of hospital life. I made sure her medications were given on time and that she had everything she needed. Sometimes, we watched movies together on her tablet, the noise of the hospital fading into the background. Other times, we just sat quietly, listening to the hum of the machines that helped her breathe.

After two long weeks, the doctor finally said she was stable enough to go home. Her lungs had improved, the spasm had eased, and she could breathe more easily. She was tired, but determined, and already planning how she would catch up on her schoolwork and see her friends again. The hospital staff cheered as she left, waving goodbye to the girl who had fought so hard.

At home, Jasmine slipped back into her routine — pancreatic enzymes at breakfast, bronchial drainage treatments throughout the day, nebulizer treatments before bed, and a careful tally of medications. She was quieter than before, a little more thoughtful, but her smile returned, and I could see the spark in her eyes.

For Jasmine, every day was a victory, every breath was a gift. And for me, being her father meant cherishing every moment, knowing how precious and fragile they could be.

Now that Jasmine is gone, everything is quieter, more empty, and lonelier than I ever could have imagined.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.