Sometimes difficult choices pay off: a Trikafta update

Originally shared to Instagram in a three part mini-series

Part One

“You don’t want to believe the drug that is saving your life is also kind of ruining it,” I said with tears in my eyes.

My doctor and I were 20 minutes into one of the more difficult discussions I’d had in recent memory.

“When I look at who I am today compared to who I was 2 years ago, it’s a completely different person. I don’t recognize myself.”

A few days prior to this appointment, I had promised myself that I’d be open and honest about the mental health struggles I’d been experiencing; I promised I’d finally admit how bad things were.

As a person prone to anxiety, it only made sense that it would escalate during the dumpster fire we call 2020. But it was more than that…

I’d begun experiencing some depression, severe brain fog, irritability, persistent insomnia that didn’t respond to sleep aids, and the worst anxiety I’d ever had. My daily level of stress and overwhelm had become nearly unbearable, and it was totally unwarranted (even given the circumstances of the world).

I’d written many of the symptoms off as purely situational, but I also recognized that some had begun before COVID, before 2020. They’d started very soon after I began taking Trikafta and had increased with time.

But, as I said, you don’t want to believe the drug that is saving your life is also kind of ruining it. So, I didn’t even let my mind go to that place…

Part Two

Why not try different/stronger sleep aids? Did you switch the am and pm doses? Drinking a lot of water helps reduce side effects; did you try that? Can’t you just take anxiety meds?

These are all things I’ve been asked, and they are all valid questions. However, for several reasons, my doctor and I feel strongly that my specific issues are linked directly to Trikafta and that adding medications (that can all have unpleasant side effects of their own) was not the right course of action.

I didn’t want to stop Trikafta – it’s been amazing in so many ways – so we decided to try reducing my dose. Straight from the clinic notes from my last visit, my doctor says: “We discussed the potential harm of reducing a drug that has been so beneficial with her lung disease. It will be up to her to decide how many side effects she is willing to endure in exchange for those pulmonary and hospital reduction benefits.”

Finding a balance has been the overarching theme of this whole experience for me, and it is indeed a delicate balance to maintain. My physical health is incredibly important, but so is my mental health.

I’ve waded through a sea of emotions since that day in clinic. I’ve felt mourning for the potential loss of something great. I’ve felt sadness. I’ve felt guilt. I’ve asked myself, “How can you do this when you’ve spent the last year and a half singing the praises of this drug?”

But here’s the thing: I’ve also felt incredibly empowered by this decision.

I am not ungrateful, in fact, I am bursting with gratitude for a supportive CF team and community, for the opportunity I’ve had to take this medication, and for the continued work happening to fine tune these drugs and find an even better treatment option (we’ve said all along that Trikafta is not the “end all be all” of CF treatment).

In the end, we each have to do what’s best for us, and I am confident that this has been a good choice for me.

Part Three

Okay friends, here’s where I tell you the good news. It’s been a month since I adjusted my Trikafta dose, and in that time, my mental health has improved dramatically!

Within just a few days of the change, I was sleeping much better. After months and months of barely sleeping, I cannot express how happy this made me! Turns out, sleep is kind of important to human health and survival. Who knew?

A couple weeks into this experiment, I told Randy, “I’ve felt more like myself the last few days than I have in a really long time.” To which he replied, “I can definitely tell!”

My general mood has improved. That soul-crushing anxiety has eased significantly. I’m able to focus on and actually complete my daily tasks. I’m not nearly as irritable or angry.

All of these things seem to verify that 1) my symptoms were indeed related to Trikafta and 2) lowering my dose was absolutely the right decision!

The downside is that I’ve experienced the return of some physical symptoms. We knew this was a possibility and I went into this situation knowing the potential outcome. However, at this point, even a half-dose of Trikafta seems to be more effective than previous modulators were for me. I’ll go back to CF clinic and also see my ENT in a month to get a better idea of how things look.

When I was in the middle of it all, I don’t think I truly realized the shape I was in. Looking back now, without such a dark cloud hanging over me, I can clearly see how much I was being affected mentally.

It feels great to be moving forward with the mental and emotional fortitude to roll with the punches of life once again. And maybe I’ll even throw a few punches myself (while wearing a feather boa, of course).

I don’t share this to discourage anyone. In fact, I hope that as you read this, you can feel the optimism and hopefulness I have for the future. I truly mean that. Things will only get better from here as we learn more about these therapies and how to improve them. The future is so dang bright, I can hardly stand it.