Part Two: Preparing for the Hospital
If only “hospital knowledge” could be used on my resume. I have cystic fibrosis and spent a lot of time growing up in the hospital. As a child, I’d spend 30-90 days in the hospital a year. My hospital stays would be 14-30 days long depending on if I was admitted for lung infections or gastrointestinal problems. My last blog post called “Part One: Growing Up in a Hospital” shared what living part-time in a hospital is like.
Thankfully, as an adult I can do most of my IVs at home and tend to spend only a few weeks a year admitted. Years of hospitalizations have taught me how to make the most of my hospital stay, or at least how to be prepared.
Preparing for a hospital stay before being admitted
When I start to feel sick and think a hospital stay may be happening soon, I jump into “hospital mode.” I try to make sure I’m ready and tend to run around like a chicken with my head cut off.
I get babysitters lined up to take care of our kid(s). We are foster parents, so depending on how many kids/ages at the time, will depend on what babysitter and when we need them.
I also try to make sure the laundry is done and we have groceries stocked up. My husband can do this, but he works full-time and is currently doing his Masters online. So, I try to help out, as it helps me feel like I’m still contributing to my family.
Packing for the hospital
I rush around trying to pack my hospital bag. Some typical items include: clothes, toiletries, books, DVDs, phone, computer, and chargers. Depending on the room my husband may even need to bring me a DVD player if it doesn’t have one. I always wear my flip flops and a fleece jacket there. I take the jacket because I get cold in the hospital and I wear my flip flops around my room, in the shower, and everywhere. I never want my feet to touch the floor (too many germs). I also bring germ-X and Clorox wipes, because I don’t joke when it comes to bacteria.
Saying good-bye to my family is the single hardest part and it makes me thankful for modern technology. I’m so lucky to be able keep in touch. Being able to do things like play battleship or Candyland via video calling makes hospital life much more bearable. I that moment, I forget I’m a patient. I’m just a mom playing games with her kid(s).
My husband will wipe down all the surfaces in the room, including the showerhead, faucets, bed rails, any and all buttons. Even with housekeeping staff cleaning the hospital room, they only have so much time and I don’t trust anyone when it comes to germs. Germs and bacteria are very harmful to me. When people with CF come into contact with germs/bacteria they can easily spread throughout our body, usually presenting as a new superbug we need to treat in our lungs.
This is the reason for the cross-infection rules. We have to be in isolation when in the hospital. Everyone who enters our room wears a mask, gloves, gown. It protects us, not them. Once I’m sure everything in my room is clean, I focus on food.
Food is the next most important aspect of preparing for a hospital stay, in my opinion. I mean… who doesn’t want to make sure they get good food?! I set up snacks to be delivered at certain times and I have figured out the best way to order my food, and know what items I can substitute. Eating in the hospital is the worst, the food is not great and I’m used to from-scratch home cooking.
Meds are the next area of focus. I make sure they have my nebulizers set up at the right times and not throughout the night (so I can manage some sleep). I check every med the nurse gives me or the doctor orders. I do trust them, but they are human and make mistakes too. I have caught a few mistakes over the years.
Advocating for myself is important and I like to be a part of my care, understanding everything. The more I understand, the faster I get to be discharged. As long as I’m responding (feeling better, have enough energy to walk laps) and have no fever, I can usually go home after the first week. I then do two more weeks of IVs (5 meds around the clock) at home via my mediport (where my IV access is located).
After being discharged from a hospital stay
Being at home on IVs is draining and rough, but worth it. I don’t get as much sleep as I’d like but seeing my family makes it all ok. It also helps me focus on getting better, so I can enjoy time with them.
I’m always glad I did the grocery shopping and laundry while preparing for a hospital stay before being admitted, because when on IVs I have little time or energy. So, having things lined up before I leave makes coming home so much easier. Even after the IV rounds of antibiotics are done, it can take my body some time to get back to my usual self. I try to increase my energy and find the appropriate amount of sleep I need. It’s a tough balancing act and takes time to adjust. Luckily (or maybe not) I have had lots of practice.
Returning home is rough and exciting at the same time, so it’s a roller coaster of emotions. I struggle with trying to keep up with everyone else. I try to remind myself not everyone is sporting an IV that is pumping hardcore antibiotics into them 5 times a day. I have to remember to stay at my pace and not feel rushed by external factors. I’m always thankful when I feel back to myself again. I’m thankful for every single day in between those IV rounds.
My last round of IVs was for 6 weeks in March-April 2019, here’s hoping for a long break before the next time. Until then I will soak up the sun and spend time with my family.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?