Part One: Growing Up in the Hospital
I grew up being hospitalized 2-4 times a year. Typically, it was for a lung infection or gastrointestinal issue. Hospital stays lasted between 14-30 days normally, so it’s no wonder why I feel so comfortable there (well as comfortable as you can be in the hospital).
By the time I was 7 or 8 I had the hospital all figured out. I knew which hospital rooms I wanted (usually based on the view from the windows). I knew what nurse could get an IV in on the first try and which CNAs would braid my hair for me. I had figured out best meals, RTS, and got to be good friends with the child life specialist.
Creating normalcy in the hospital
When I was younger, I was allowed to leave my room and go to “school” in the hospital. They had a school room for long term patients where a tutor helped us with homework. I would get up, get dressed, and walk down to the school room lugging my IV pole behind me. I LOVED the feel of normalcy that “going to school” gave me. It made me feel like any other kid and forget about where I was and what was happening.
I have really fond memories of childhood friends that I met in the hospital, most whom had CF, too. We had wheelchair races, IV pole sliding contests, and movie dates. We played Bingo on Tuesdays, visited the gift shop to buy candy bars, and convinced my Dad to supervise all of us on walks around the hospital.
My love/hate relationships with hospital stays
So, while I had many treatments, procedures, needle sticks, and surgeries, I still never fully hated the hospital. I saw it as a place of help and support. It was a place that always made me feel better. The hospital staff and my family tried to make my hospital stays as happy as they could, obviously they did an amazing job to take away the focus from the negative and scary stuff.
I still always wished I was at home with my sister and other parent. It was very difficult to not be home, to miss school, and not hang out with my friends. As the years went on, it was discovered CF patients can spread super harmful bacteria from patient to patient. Shortly after came strict cross-infection guidelines.
Hospital changes post-CF guidelines
Now, I am always in isolation (as all CF patients typically are). This means anyone that comes into my room has to wear a gown, gloves, and mask. This is to protect myself from any germs outside of my room. It definitely makes it harder to get to know the staff. I can barely see them and they try to keep a distance if possible.
As an adult, I think the worst aspect is being away from family. My husband, Andrew, and I foster youth in our area. We currently have a toddler with us (since 2017). Most of the children we have had in our home don’t deal with change well. Any new situation can upset them. And it is hard to be away from my husband and our kid(s). I try not to miss any school functions or holidays, by doing IVs at home.
Other aspects of hospital stays
Stepping away from work is another difficult aspect to being hospitalized. Not being able to work is hard both emotionally and financially. I usually end up doing as much work from my computer that I can. Andrew and I also try to prepare financially, but that can be hard to do. It’s hard to get work done at the hospital and it’s hard to feel like I’m not doing enough for my family.
Lots of confusing and upsetting emotions would drive me nuts If I didn’t have tasks to focus on. So, I do a lot of home managing from the hospital bed: calling sitters, calling pharmacies, setting reminders to Andrew and I’s synced phones. A lot of preparation goes into being hospitalized, which I talk about more in “PART TWO: Preparing for the hospital.”
Doing so much while in the hospital may mean less resting, but… who gets rest in a hospital anyway. They come in five times a day for IVs, four times a day for treatments, many times for consults, blood draws, CAN rounds, and meals. The most sleep I get is a three to four-hour period. I’m always so excited to go home and just sleep in my BED!
The hospital is my second home
Even though it’s not the most pleasant experience as an adult to be admitted, I’m still oddly comfortable there. It feels safe and familiar. I’m sure being in the same hospital all my life has helped me bond with it and the staff. I never really thought about how odd that is for other people. Most people probably don’t think “familiar and nostalgic” when referring to a hospital. I mean who bonds with a hospital? But it has been my second home all my life.
Having a chronic illness has normalized experiences that others find traumatic and very unpleasant. It doesn’t bother me; I don’t really mind. I have never known different, because I was born with cystic fibrosis. I will look at that as a silver lining. Having CF has taught me a lot, but the biggest being: I’m ready for anything!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?