This blog post was made when I was in the hospital, but never finished it. Just wanted to upload it anyways so it doesn’t get lost.
A hospital stay is different for everyone. To say they have a specific “way” they have to be is wrong. Although with Cystic Fibrosis, hospital stays are regular thing and they are long. Cystic Fibrosis causes frequent lung infections that sometimes don’t go away with just oral or inhaled antibiotics. It’s frustrating to try so many antibiotics and it seems as if nothing is helping. You feel as if you will be stuck in this rut forever. Let’s face it, people with CF don’t have as much energy as a regular person. Our bodies are working harder all day and all night just to breathe. Sometimes, breathing feels like a chore. It’s not something we take for granted. Going into the hospital doesn’t always mean we are super ill, we have to go in for “tune-ups” when we are feeling junky in our lungs, fatigued, coughing up blood, etc.
Speaking from personal experience, it is BEYOND frustrating when you try different antibiotics at home and nothing works. When the infection decides it’s tired of a certain drug, you will be able to tell. For a long time, I was able to use oral and inhaled only to manage and even treat my infections. After awhile this can become ineffective for some CFers, and there comes the need of intravenous antibiotics, usually done in the hospital. With some antibiotics you are given the choice to stay home and do them, but being honest, that’s pretty tough to manage that schedule and actually sleep for a full night. I used to be able to manage home IV’s, before I got really sick and couldn’t even go an hour without napping. This is when I decided it was time to go into the hospital, even though it’s the beginning of a new semester at college.
My medical life is always a mystery. Everything’s a mystery. They never know why I have some symptoms, if I had a dollar for every time I heard a doctor say: “I’m stumped, I’m not sure what is going on.” I’d be rich. Living with CF can feel like running up a stair case and tripping every two or three steps. We go forward but then fall and end up going backwards. It’s so unpredictably frustrating. Sometimes when I start to feel better from the IV antibiotics, I am fearful. Not really fearful of feeling good, but kind of fearful of feeling good. Only because things change so quickly. I don’t want just a burst of a few weeks of energy and a little bit of normalcy, I want freedom, healing, and recovery. Sometimes, infections colonize and they are permanent. This is when the doctors will just work on managing it as best as we can.
Battling2Breathe 