Because my diagnosis came late in life, I led a typical life – the only major medication I had to take was inhalers regularly. About twenty years ago though, my health took a downward turn. Now, I am listed on New York and Massachusetts for a lung transplant.
After my diagnosis, I started doing CF treatments every day – four to five nebulizers in the morning with a vest, and again in the evening. I am currently in a pulmonary rehab program, involved in yoga classes, and try to stay active all of the time. I am motivated to stay compliant with all of these treatments and remain fit because of my family.
Color is purple.
Food is chocolate.
Musical artist is Sting.
And team are the Mets.
If I could visit anywhere in the world, I would go to Egypt to see the pyramids.
My role model has always been my mother because of the kindness she showed everyone she encountered.
If I could give someone recently diagnosed with CF some advice, I would tell them to read and learn as much as possible – and to seek out your local CF Clinic. Stay positive… and stay compliant!
I am both grandmother and primary caregiver for two beautiful children with cystic fibrosis. Raising my grandchildren – Elijah (7) and Renae (5) – has been a major adjustment for me, especially after raising my own four healthy children.
Every morning, Elijah and Renae wake up, take their medication, eat breakfast, and head to school. They both go to the school nurse during the day to take their enzymes and to do their breathing treatments. Once they arrive home, they take enzymes with their snacks and do treatments again before bed. Elijah also has a nurse come over to help set up his feeding tube before he goes to sleep.
Both my grandchildren play sports – Elijah likes baseball and Renae is in gymnastics – and both of them like to swim. I see an obvious difference in their health when they are active. It amazes me daily how they go about their days as though nothing is wrong and live every day with joy.
My favorite color is blue.
My favorite food is Chinese.
My favorite holiday is Christmas.
I love to watch the Hallmark and Discovery Channels.
If I could give other caregivers advice, it would be to remain patient and advocate for your child with CF. Learn as much as you can and talk to other families affected by the disease.
“Some people wait their whole lives to meet their heroes, I gave birth to mine.”
I am a CF mom living in upstate New York. I am a single mom with three boys, two of whom have CF. Zachary, the oldest at 16, has CF along with his younger brother Alex, who is 13. My youngest Tyler does not have CF. They all play a bunch of sports at their school. Zachary plays varsity soccer at his high school. I am immensely proud of all of them.
Zachary was diagnosed at 5½ months, while Alex was diagnosed at birth. By the time I had Alex, we had the hang of the CF routine, but like any CF family it presents its challenges. Typically, my kids won’t do their first treatment session in the morning, so we can get to school on time. They will do their meds once they get home from school and then again before bed. As far as compliancy, I try to keep as strict a schedule as possible; we take care of everything we need to.
I am a firm believer that exercise has kept my kids out of the hospital. The only time they were every hospitalized was around when they were diagnosed. I think it also helps my kids feel normal. Really, though, it has been difficult for the kids to understand that CF is totally apart of them. They really feel it when they want to go to sleepovers, visit family or on vacation – things like that. With that being said, I want them, and anyone else with CF, to know that you can control CF, don’t let it control you.
We are a big sports family, I actually help coach some of my sons’ teams as well!
CF has brought my sons closer together.
I feel like any award my boys win is a huge accomplishment, Alex was just awarded defensive player of the year from his soccer team.
My favorite color is green.
I love prime rib.
Thanksgiving is my favorite holiday.
Green Mile is my favorite movie.
My boys are Bills fans, so am I.