Living In The Trikafta Era

Many of us are old hats when it comes to the bog standard CF stuff. So, this new territory that is the Trikafta Era feels almost like an illusion of health that many patients are still adjusting to.

The positive changes are being celebrated with patients reaching new “out of hospital” milestones. Other benefits are increased lung functions, less treatments, and the Trikafta baby boom that is taking the community by storm.

The downside has been an increase in side effects or reduced dosing regimes for some patients. Survivors guilt, unwanted weight gain and navigating when a tune up is due seems to be hot topics of conversation among the cf community too.

Trikafta really is paving the way for the future generations to come. They will not know what life before modulators was like. No more dreading reaching the thirties or facing lung transplants chats.

The positive changes

When I started the superhuman pills over two years ago, it put a stop to just existing by giving me a better shot at living. Before I started CF modulators I couldn't walk two flights of stairs without multiple rest stops. I was heading into hospital for IV treatment every 4-6 weeks on rotation. Life was a struggle.

Trikafta has seen me grab the bull by the horns setting myself exercise targets. Having the confidence, energy and most importantly, breathing capacity to push my limits physically. Kayaking, running, and cycling are now much loved hobbies. I never thought I would see the day these little deflated puffers could reach 5k or 10k.

And the not so positive changes

Transitioning from needing regular IVs to keep me in tip top shape to navigating when they are now needed has been a stumbling block. The usual red flags were an increase in cough and mucus. Trikafta minimises those symptoms which have been replaced with fatigue and just a general feeling of being “off” when unwell. Sometimes going weeks to months before having a chat with my CF team about treatment options. It is bamboozling when a doctor recommends a course of IVs because I had a few daytime naps or I have been feeling a little run down. This is what the new CF sickness scale was going to look like!

The pounds have piled on, I had only ever known CF skinny. It was a challenge learning to love this new version of my body. I’ve shed that sick girl skin I am so accustomed to, leading me on a journey where I needed to learn to love and appreciate the jiggly bits that I never had the privilege of before.

Staying focused & committed

I have struggled with Trikafta side effects which felt debilitating at first until finding a regime that thankfully worked for me, even with a reduced dose I still feel almost superhuman. Life in the Trikafta era makes the true colours of CF feel like such a distant memory. But, I will never forget the thirty two long, hard years of bad days because they keep me in check when I convince myself I can slack off a neb or two!