What Having A CF Flare Up Looks Like
Last updated: February 2023
Since modulators broke onto the scene for the cystic fibrosis (CF) community a few years back, having a flare up can sometimes seem a thing of the past. Which means identifying when your health is sliding down a slippery slope, isn't always as easy as it once was to recognise it.
What amazes me is the less resilient I am required to be, the more it knocks me down when resilience is required. I find dealing with a CF flare bamboozling since I got my new almost superhuman Trikafta lungs. The security of routine IV’s, living in fight or flight about hospital admissions and basically adapting every single angle of my life to ensure last minute flares can be easily and quickly dealt with has become a thing of the past.
Recognising a flare up post-Trikafta
In a very strange way, it is incredibly hard recognising this new wave of CF flares and what they look like. What is more difficult is managing the flares. The more time that passes between flares, the harder it is to handle them. A flare now can look like a few months of wobbling down the unwell road. Mixtures of good days and bad days that seem a little less intrusive. I can stretch that yo-yo of symptoms a lot further than what I could before.
This new normal is destabilising because before modulators, increased mucus and that horrendous CF cough were the first indicators something was up. Now it's a strange, hazy fatigue or the feeling of being run down but not super sick. It takes a lot longer for the cough and the mucus to rear its ugly head. By the time it does, it feels almost like you’ve missed a bunch of warning signs that you needed to plan for IVs.
New IV reactions making it more difficult
The other difficulty since starting modulators is my body, my temple, seems to be much more sensitive to antibiotic treatments. I have been experiencing chronic exhaustion, severe nausea and itchy skin rashes as reactions which calls for an artillery of other meds to keep me comfortable whilst on IV antibiotics.
It becomes a battle with myself to manage 8 hourly IVs, feed myself, exercise and hook up to all the fluids whilst trying to carry on with my non-CF stuff too. I used to be an IV pro, taking them into work and plodding on but nowadays, I can barely make it into a bath and plod on for the two gruelling weeks I’m signed up for. It is tiresome.
I am still navigating how to keep on top of flares, learning the new normal and finding a balance between just feeling a little overworked or heading for an IV stint. I hope to have a better handle on this new normal soon but until then, here's to the red flags and, the flares that surprise me!
Do you struggle with CF flares? Share and discuss with other CFers in the comments below!
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