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.

Mental Health Matters – Trikafta update

(Originally shared on 7/22/2021)

I had CF clinic today and here is the biggest takeaway: sometimes we have to do hard things and it’s okay to have mixed feelings about something.

I’ve talked a lot about the benefits I’ve experienced on Trikafta. I am endlessly grateful for the ways in which it has improved my life with CF. But at the same time my physical health has been improving, my mental health has been declining. Recently, that decline has been more rapid and noticeable, negatively affecting my daily life and relationships.

For a long time, I tried attributing some of the issues to stress or feeling anxious about life in the time of COVID. But I’ve also worried (and deep down, I think I knew) that it was at least partially related to Trikafta. The symptoms have become too much to ignore, so today — with the wise and loving guidance of my incredible doctor — I made the decision to lower my Trikafta dose.

I am not stopping entirely, and we aren’t absolutely certain that this change will minimize the negative side effects. There is also the chance that lowering my dose will mean I receive less benefit and some of my old physical symptoms may return.

But I feel like it’s worth a shot and I’m approaching this change with optimism and hope. I’ll admit, I cried a lot today. There are worries, heartache, and a little mourning happening right now along with hope for a better balance between my mental and physical health.

It’s okay to not be okay

During this most recent hospital stay, I shared quite a bit (on Instagram) about the daily hospital grind. The constant parade of people coming in and out of my room, blood draws, x-rays and CT scans, the incessant beeping of IV pumps, talks with med students, and more. I hope that those who watched those updates learned something new or saw something they could relate to. It was fun for me to share that with you guys!

But something happened that I didn’t talk about, and I think it’s important to share it now that I’ve had some time to process it all. CF is weird (to say the least). Sometimes it looks like strength, positivity, perseverance, and hope.

And other times it looks like crippling anxiety, fear, frustration and pain.

The picture was taken after having my picc line placed on the day I was admitted. I had spent the better part of an hour panicking, silently crying, reliving the trauma of past experiences, and feeling as if I might die (even though I knew that was unreasonable, nothing about anxiety is reasonable).

I’m generally sedated enough that I’m blissfully unaware of what is happening. But this time, I was painfully aware of every little thing — every word being spoken, every sound, every sensation — and it sent me into a total tailspin. I found myself completely unable to speak, to voice my discomfort, to call out to the nurse to ask for more sedation. So I laid there, crying, feeling helpless, and having the worst anxiety attack of my life for a full 40 minutes.

If I’m being totally honest, this isn’t the first time something like this has happened. I first started to notice my anxiety a few years ago. At the time it was totally manageable, and it made a lot of sense to me. When you’ve spent as much time in a hospital as I have, you definitely encounter some scary and anxiety-inducing things.

I’ve been poked and prodded at since I was a baby. I remember, as a very young child, being pinned down by multiple nurses and my own mother as a sputum culture was collected. I remember screaming through nearly 10 attempts to place an IV before sinus surgery when I was six. I remember sitting on my dad’s lap around the age of 8 or 9, as he firmly held my crossed arms by my wrists, so I couldn’t move while I was getting a shot. I remember my first ever picc line being placed (after two failed attempts) while I was in the medical ICU, horribly sick, completely alone, and absolutely terrified. I remember the time a nerve bundle was hit during a picc line placement and my entire arm felt like it was on fire (a pain I still describe as being worse than childbirth). I could go on and on, really.

It’s no wonder that I have some anxiety, and even PTSD to some extent, because of these experiences. It’s hard to describe the feeling of utter powerlessness you feel when you’ve been subjected to these kinds of things your entire life. To surrender your body to strangers (well qualified strangers, but strangers none the less) and relinquish all control as they perform various procedures on you. It’s not something you ever get used to.

Over the last few years, I’ve been able to identify a potential trigger and utilize various coping skills in order to get through some of my anxiety. This has worked pretty well, and I’ve worked through a lot simply by being mindful. But then, in April, following my sinus surgery, I had a massive anxiety attack in the car on the way home. I didn’t see it coming. I wasn’t prepared for it. And it was brutal.

This most recent experience was similar in that it was totally unexpected. I was experiencing my baseline picc anxiety, but was able to ground myself and breathe through a lot of it. Then, once I was on the table and that first dose of sedation wore off, it suddenly hit like a ton of bricks to the face.

I was wheeled into the hall after the procedure and about 10 minutes later, a nurse brought Randy back to see me. He immediately ran to my side, grabbed my hand, and I cried harder. Once I got up to my room, still visibly shaken, I told my nurse a little bit about what happened. She encouraged me to talk to my CF team about it.

I had never admitted to anyone (including myself) how bad things had gotten; that I wasn’t able to control or even predict these anxiety attacks anymore. I hadn’t dared to say that I needed help. But once I started talking about it, an incredible thing happened — everyone rallied around me, they were incredibly supportive, and we started talking about ways to make this better. I realized that talking about my experiences was incredibly cathartic. I cried, I was able to talk about some of those terrible experiences without feeling the fear and anxiety that are usually associated with them, and it felt so good.

I’m an enthusiastic advocate for mental health. I preach about it all the time, yet I had a hard time identifying and admitting the issues I was having. And I believe that’s the case for many of us. Individuals with chronic disease and their caregivers experience higher rates of depression and anxiety,  yet it’s something that we don’t openly talk about (at least not as openly as we should). When the physical aspects of this disease are so unforgiving, it makes sense that our mental state is affected as well. So let’s talk about it!

I don’t know when my next anxiety attack will hit. I’m now experiencing anxiety about my anxiety, wondering when I’m going to lose control again, and I no longer trust myself to “get through it” like I was previously able to. But I know that I have a team of people on my side, we have a plan, and I’m not in this alone. Talking about it opened the door to healing, and for that I am incredibly grateful.

I like the parts of me that are hopeful, strong, and confident that I’ll kick this disease’s ass. But those terrified, anxious, and out of control parts of me are just as essential to my being. They’re part of who I am. Learning to accept that might be easier said than done, but I’m making an effort.

It is 100% okay to not be okay all the time, and admitting that has made me feel more okay than I have in a very long time.