Antibiotics, I Love And Hate You
I’ve been fighting lung infections for as long as I can remember. I try my very best to fight and remain healthy, but they always seems to find me.
I can sense an infection
Sometimes it feels like I have a sixth sense where I can tell when I have an infection, pneumonia, pseudomonas, etc. I can tell the difference between each of them because they each react differently to my body.
It sounds gross, but one way to tell the difference is my mucus changes in taste and consistency with each one. The chest pains are also different and it’s always consistent with each one. I think that’s my CF power, knowing which is which before the doctor confirms it.
My CF antibiotic regimen
I’ve been on antibiotics consistently for years, usually Cayston and Tobi cycles, 28 days on one and 28 days on another. It's a repetitive cycle that exhausts me so much. Since my pseudomonas has grown resistant and stubborn, I am now on Colistin. I am now on this and Cayston indefinitely.
Antibiotics are interesting. They help so many people but yet, for a lot of us with CF, it’s not a standard 7-day treatment. It becomes our life. I do Cayston 3 times daily and now Colistin 2 times daily. My last round was for over 30 days continuously because my last infection was severe.
Side effects of CF antibiotics
I wish antibiotics came with no side effects, but that’s a stretch. Antibiotics range in side effects and I feel like I get most, if not all, of them. Most days I feel so tired and worn out that I don’t know how I even manage to do things. But, I force myself, my body hurts every day, my joints throb and ache, and some days walking is painful. I use my walker on those days and I breathe and grit my teeth through the pain.
Then there are the belly issues like nausea, diarrhea, and lack of appetite. As a CFer, I have to eat, but that is also forced because I know I can’t lose more weight. I sometimes wish I could be like everyone else, where I could do a week course of antibiotics and be done with it, but I know those are not the cards I have been dealt.
My love/hate relationship with antibiotics
IV antibiotics are exhausting. My port is accessed and I am either at home doing infusions or in the hospital. If the antibiotic is new, then we do a test run at the hospital and then I can be sent home on IVs for the next 2 to 3 weeks. The schedule can range from every 4 to 24 hours. It’s so exhausting, painful, and just plain a pain in the butt. But, I’m glad that I can feel better after a few days.
One thing with me and CF antibiotics is that I know that once I finish one course I will start another. I hate antibiotics because of what they do to me. I love them too because they’re a part of what keeps me here, keeps my infections at bay for a bit. It’s this CFer’s cycle of survival.
What's your relationship like with antibiotics for CF?
Have you (or a loved one) been experiencing any negative side effects from Trikafta?