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Thankful to Live Closer to My CF Care Center

Last updated: September 2022

My cystic fibrosis (CF) care center is an important piece of my life. I’m thankful for the relationships I have developed with each member of my care team. I grew up about 75 mins away from my CF clinic, which often meant missing a whole day of school for my quarterly CF appointments, but my parents always made it fun and enjoyable, despite it being a long day.

Since my CF appointment takes around 3 to 4 hours and we’d been on the road for over 2.5 hours, my parents always made sure we ate out or did a little shopping afterwards. They made CF clinic days something that I would look forward to and enjoy.

Not easy being far away

However, whenever I needed to be hospitalized, being further away was more difficult. One of my parents always stayed with me in the hospital. But that didn’t make it any easier to be away from my sister and my other parent. If we had lived closer to the hospital, then I would have been able to see them more during my hospitalizations. I usually only saw my sister on the weekends, that was the hardest part.

Sometimes my CF doctor would order IV meds to be shipped to me and I would do my IVs at home instead of being hospitalized. This was a great solution! I loved staying at home, being with my entire family and keeping a semi-normal routine, while still getting much-needed treatment. However, this was only an option when I wasn’t too sick. For example, if I just needed what we called a “tune up”.

As an adult I moved around quite a lot. This often meant driving more than 2 or 3 hours one way to my CF clinic sometimes. Living far away made life a lot more difficult when it would be 5 hours in the car. Especially when I drove by myself, it made for a long day for me. Plus, taking a full day off of work (using a sick day or missing pay), scheduling around other appointments, making sure I didn’t miss any meals, adding the cost of grabbing food on the way or packing a meal, and trying to avoid bad weather. I didn’t love it, I’ll say that.

An ideal situation

I was overjoyed when my spouse was offered a job that was in the same town as the CF clinic I grew up attending. My sister also lived in this town and my parents were only 45 minutes away. It was an ideal situation to be so close to family and to have my CF center and hospital in the same town as where I lived. Andrew and I jumped at the chance to be closer.

Now that we live only a 10 minute drive from my CF clinic and hospital it has made my life a lot simpler. My CF appointments no longer take a full day and my hospitalizations are not nearly as boring because I have more visitors to keep me company. It make one huge aspect of my life a lot easier. I’m thankful for the flexibility that my CF care team members had when I lived farther away, but I love being nearby and don’t think I could go back to commuting again.

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