Caring For My Dad With CF

I grew up learning my dad’s cystic fibrosis treatment routines and helping my mom as another caregiver. My dad may not need as much help anymore post-transplant, but our family’s close bond is stronger than ever.

| 8 min read
Clarisse Valles
Clarisse Valles
Clarisse hugging her dad at the hospital.

My first memories as a kid that I can recall take place in a hospital. I am an only child living with my dad who has CF, and my mom, who is his caregiver. My dad had a late diagnosis when he was 17 years old in 1999 — just eight years before I was born. 

When I was 1 year old in 2008, my dad had his first double-lung transplant. He wanted the ability to be with his family and see me grow older. After the procedure was done, I was the first person he asked to see. He recovered after two weeks and was doing really well post-operation. I remember we would go to the park, have picnics, go on walks, and even go to the mountains during the winter to see the snow.

However, in 2016 my dad was facing organ rejection and began to struggle with a lot of things. My mom left her job and dropped everything to be his full-time caretaker and help him with his daily needs.

My dad was never alone. Far from it, actually — my mom and I were with him every step of the way. My mom even taught me his procedures and schedules so I could help my dad too.

I was glad I could be of help to them. I saw how hard my mom worked for not only my dad but for me as well. She always stayed positive and saw good things in our future.

Though it may sound difficult, it wasn’t always that bad. I was always understanding when it came to my dad being unable to do things a lot of other parents could. We couldn’t go places that involved a lot of moving or that weren’t wheelchair accessible. He couldn’t go to my school for parent teacher conferences or award ceremonies, and we even avoided areas with too many people in fear of him getting sick. We had to take every necessary precaution since my dad was immunocompromised — but that was okay because our time at home together was always well spent. We would play games, make jokes, and laugh together. We wanted to make the most of the time we had. Every day we spent together made our bond stronger. He may not have been able to do things other dads were able to do, nevertheless, we figured out things to do that wouldn’t put him in harm’s way. 

However, he was still very sick and could barely walk around the house. I remember helping my mom out every chance I got. I helped her carry his oxygen tanks, sort his medicine, and even give him insulin shots before eating. I was like a mini nurse trying to help as much as I could at such a young age. During that time, I learned a lot of things people my age typically had no clue about. I would learn times tables in class and when I got home, I would learn how to set up his oxygen tank regulator. I was growing up faster than other kids and learning things that even some adults weren’t aware of, but this was my norm. I knew what to do in case of an emergency and I knew procedures for worst case scenarios. Then, one day, I had to apply those skills in real time.

In February 2019, my dad’s lung function was getting worse. It was early in the morning when my mom woke me up to the last thing I expected to see — my dad laying on the bed surrounded by blood. He looked like he was in so much pain. At one point he even started telling us how much he loved us. I was scared, I didn’t know what was going to happen to him. My mom was doing everything she could to try and make him feel better, but nothing seemed to work. I didn’t want to see him go, I still had so much to say to him and so many things to do. That day I realized that fear didn’t paralyze me. I called 911 and explained the situation. I told them that we needed an ambulance quickly and provided our information. I stayed on the call with them as I prepared a bag for my mom and me. I packed our essentials and things we would need to spend the next few days in the hospital. I knew what was coming next and I had to be prepared. When the ambulance arrived, they couldn’t take all three of us, so I stayed home.

I stayed wondering if he was okay. Did he make it to the hospital in time? Is he stable now? Will I ever see my dad again?

On March 5, 2019, at approximately 5 a.m., my dad got a call from the hospital. They had a new set of lungs for him — for the second time. Having one double-lung transplant is risky enough as it is, but a second one? That’s even riskier. We headed to the hospital together. When my dad was almost ready to be taken to the operating room, we wished the best for him. I thought to myself as they wheeled him away, “Is this going to be the last time I see my dad?” Whatever happened in the next few hours could change the course of my life. I could either be celebrating the success of the surgery or grieving — it all depended. I was terrified. The surgery lasted 18 hours. Those were the most nerve-racking 18 hours of my life. My mom and I barely slept and we jumped every single time we heard a “code blue,” hoping it wasn’t him. Waiting and not knowing what was going on or how he was doing was the worst part.

It took longer for my dad to recover from this surgery. He had lost a lot of blood and was in a medically induced coma for three days. Even during that time my mom and I would talk and sing to him. When he woke up, I was eager to see him. I had to enter with a gown, gloves, and a mask, but it was worth it. My dad was going to be okay and that's all I cared about. While he was recovering, I was in school. My grandparents had to take care of me because my mom never left my dad's side. She was lifting his spirits and aiding him towards a fast recovery. I wished that I could also be with him every second of the day to keep him going. After school each day, my grandparents would take me to see my dad and check up on how he was doing. I would talk about my day and would even stay to eat the hospital food for dinner.

It has now been three years since my dad received his second double-lung transplant. He is happy and healthy. He has a newfound passion for things he couldn’t do pre-transplant — like cooking. He is currently working as a cook in a Japanese restaurant!

Thanks to his surgery, my dad doesn’t only have hopes, but he has plans — plans for the future and things he wants to do and learn.

He wants to learn new languages and how to play the guitar. He even wants to travel. We keep ourselves busy now, but we always make time for each other. My mom always has activities and events planned for us on weekends. We even have a dog who we love to play with and take on walks. I am elated that my dad got this opportunity to live, not just spending most of his time in a hospital, but being out there and finding more things that bring him joy. Today, I am closer than ever with my dad. Having a dad with CF made the bond I have with my family even stronger, and I wouldn’t trade it for the world. 

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Clarisse Valles

Clarisse Valles is a high school student residing in California. When she's not spending time with her family and friends, Clarisse enjoys reading, going on walks with her dog, playing the violin, and learning other instruments. She also enjoys sports such as tennis, surfing, and swimming. You can find Clarisse on Facebook and Instagram

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