Why My CF Clinic Visits Are a Family Affair

The expression, “It takes a village,” sometimes seems to apply to my clinic visits. I like having my family accompany me. They support me emotionally and help me keep track of important health information.

| 4 min read
Morgan-Barrett-Headshot
Morgan Barrett
Morgan-and-husband-Kory-rectangle

Clinic visits are long and usually an overload of information. When we were kids, my brother, sister, and I had our clinic visits on the same day at the same time, and our mom was the only adult there to take everything in and then update our family on how things went. I sort of knew it was a lot for her at the time, but now I realize that it was truly overwhelming. Sometimes, especially when the news at clinic isn't good, it's really hard to remember everything that was said; so as an adult with cystic fibrosis, I always have someone with me at clinic -- either my husband or my mom.

I really can't imagine going to clinic alone. Our CF care team members have become our friends over the years, considering that we've essentially seen the same team at least four times a year for 12 years, plus frequent phone calls and emails, hospitalizations, and even my brother Mason's two liver transplants. Even though I am really comfortable with my team, and I know they have my best interests in mind, it's still important to have someone else there with me to ask questions, clarify things when necessary, and to be there as a second set of ears.

Mason and I go to Nebraska Med for clinic, which means traveling more than three hours every three months for visits. Because his health care became a bit more complicated since his liver transplant in 2016, I have been accompanying him and my mom to his CF and transplant clinic visits in addition to traveling to Omaha for my own appointments.

Honestly, I look forward to our trips. Even though it's not for anything “fun,” the travel time is really good quality time with my mom and brother, neither of whom I get to see very often since we live a few hours away from each other. I know my mom feels more supported having another adult there, and there have been a few times that my brother's visits haven't gone as expected. In these cases, I think having three of us present makes all of us feel like things are going to be OK. There's just something about having support that makes things seem less daunting and scary.

My husband goes with me to my clinic visits, and my mom has stepped in the few times that he couldn't make it. Kory has been right by my side at clinic and during hospital stays since we started dating over five years ago. He had been present long before he “had” to be. For us, it's just a no-brainer that he comes to my clinic visits. Kory has a busy work schedule, but he always makes time for my appointments because he just wouldn't have it any other way.

Having Kory there makes my visits so much more enjoyable and even light-hearted. I have a pretty decent gallery on my phone of photos and videos taken during clinic visits -- sneak-attacks of him with funny Snapchat filters while we're waiting in the exam room and videos of him trying out pulmonary function tests (with his FEV1

 

 well over 100 percent ... show-off), to name a few.

Having someone with me at clinic matters for the informational side of things, but also, and maybe more importantly, for the emotional and mental side of things. I have definitely felt anxious going to clinic, but having my husband or mom (and sometimes my brother) there definitely makes me more comfortable and even makes the day enjoyable.

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Morgan lives with her husband, Kory, and twin babies, Alder and Winslow, in rural northeast Kansas where she enjoys gardening and chicken-keeping. She has many interests and is always entertaining her curiosity, but her mainstays are spending time outside, reading, writing, photography, and cultivating a relationship with plants. She grew up with two younger siblings, Allison and Mason, who also live with CF. You can follow her on Instagram. P.S. Beets, Bears, Battlestar Galactica.

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