I've been thinking of my life after Trikafta as a series of pros and cons ... like on “Friends” when Ross made a list to figure out why he should/should not date Rachel. Ross needed to decide if he wanted to be with Rachel or Julie. The first thing that Ross had on Rachel's con list was, "I guess she could be nicer to her friends." The next few cons were that "she's terrible at her job," "she's a little spoiled sometimes," and “she can act kind of stuck up sometimes."
Trikafta is exactly the same. For most people, there are a lot of pros because unlike Rachel, Trikafta is VERY good at her job. But for a lot of people, she gets a little crazy and causes some trouble in the form of side effects. Weight gain, mental health issues, acne, rashes, sinus inflammation -- there's a long list of adverse reactions that I've had from Trikafta.
The most influential, however, has been an increase in my anxiety and depression and instability with my mental health -- something that I thought I had under control.
I was a pretty healthy kid. I danced, did karate, and was very active until I was 18 -- a year that was followed by frequent hospitalizations. Since then, I've gone through long periods of good health, bad health, noncompliance, ups and downs, sickness, sinus surgeries, FEV1 down to 38 percent and the like. A lot of patients have similar stories, oftentimes worse.
When you're face-to-face with your own mortality and add frequent breathing treatments and countless medications, it comes as no surprise that many adult cystic fibrosis patients have had issues with anxiety or depression at one point or another. I started medication for my mental health in 2004, but if I had to pinpoint when it all started, it would be the year I left for college.
Before college, my parents pretty much controlled what I did, and I know that's the case for a lot of people -- not just people with CF or other chronic illnesses. For example, when I lived at home, my mom was the one who chose what to make for dinner, what time we ate, and then she was the one who cooked it. My mom still did my laundry (thanks, mom!), and she still did the grocery shopping. She's the one who cleaned the house and ordered my medications. These are things I didn't even really think about before I moved out; they just happened (and yes, I realize how lucky I was!). For healthy, "normal" people, things like this might have been enough to invoke a little bit of anxiety once they realized they had some additional responsibilities on their plate in addition to classes, school work, working part-time, and still trying to have a social life.
For someone with cystic fibrosis, autonomy was a whole other ballgame. What started as, "What time would be best to do my treatments?" and "I have to do my therapy first," eventually turned into, "Will skipping my meds really matter?", "I can do it later," or "I'll do it twice tomorrow to make up for it," but I never did.
I had a pretty mild case of CF my entire childhood, so it took a while for the consequences of not doing my treatments to sneak up. In February 2003 of my senior year, I was admitted for the first time since I was diagnosed at age 1. While I was there, my doctor made me speak to a child psychologist. We had never really discussed my non-compliance, but he obviously knew. Adults with CF were becoming more common, and this wasn't his first rodeo with a non-compliant teenager.
To say that the psychologist and I didn't "jive" was an understatement. What she did help me with, however, was identifying that I was experiencing depression and anxiety and that a transition to college was huge for anyone, let alone someone with a chronic illness. I began recognizing the symptoms I was having and realized that I had been attributing them to other causes. Sleeping too much during the day? I must have been tired from staying up late. Not interested in socializing? I just wasn't in the mood. Forgetfulness? I had a lot going on. Difficulty concentrating? My brother was diagnosed with attention deficit hyperactivity disorder. Maybe I had it too.
I've seen many other psychologists, social workers, and psychiatrists since 2004, but I feel like it was just within the past year that we finally got my medication "cocktail" combination perfect. I was on the correct doses of Cymbalta®, Wellbutrin®, and Seroquel® to balance out my depression and my anxiety and manage my fatigue. And then BAM ... I started Trikafta. Since starting the drug on Dec. 3, my most common side effect was fatigue -- I'm talking about sheer exhaustion. As time progressed, however, I realized that I was struggling with an increase in depression, which made me tired. Con for Trikafta.
A day in bed turned into two, and by the time I had entered my third month on Trikafta I was experiencing weeklong periods of staying in bed, cuddling with my dogs, and not wanting to go anywhere or do my treatments.
Why was everyone talking about having so much energy with Trikafta? All I wanted to do was stay in bed.
Luckily my lungs were stable because of the drug (pro for Trikafta), but skipping my treatments is not something I wanted to fall back into. To help with the fatigue and my motivation after starting Trikafta, my pulmonologist suggested that I decrease my dose of Seroquel. I was on Seroquel, in part, to help me sleep and apparently Trikafta could cause an increase in absorption and effectiveness of the drug, which could explain the drowsiness and lethargy in the morning. As advised, my psychiatrist cut the dose of Seroquel in half. It helped a bit, but after a month, we decided to discontinue it altogether because I was still feeling overtired. And then the panic attacks and anxiety hit! Con for Trikafta.
To temporarily alleviate the anxiety, my doctor has introduced Xanax® until we balance out my antidepressants. I don't want to be on benzodiazepines long-term because I want to conceive in the near future, but we decided it's best to control my anxiety while we get a handle on changing the other medications around. I've since discontinued Wellbutrin, and I'm trying Rexulti® instead, which is used to "boost" antidepressants. So far so good, but I'm being cautiously optimistic. I'm trying not to think about it too much, but part of anxiety is waiting for it to rear its ugly head again.
I'm hopeful that we'll figure out the right balance again, but I can't help but resent Trikafta for it. How could something that makes me feel so great physically make me feel so crappy mentally? Is it just me or have other people felt the same? I know there are others who have had similar thoughts and experiences, but it's hard to not feel isolated and alone. Con for Trikafta. Luckily my husband has been really supportive, but I know it breaks his heart that I've been struggling with something I've been so excited about.
Don't get me wrong -- I'm not trying to complain. Trikafta has done amazing things for me, and I am forever grateful. Pro for Trikafta. I don't cough, I can climb stairs without being winded, and the stability I have to fight colds and viruses is amazing in itself. It's simply a medical miracle! And quite frankly, typing out the downsides of the drug really makes me feel like a spoiled, picky brat.
The benefits of me being on Trikafta SEVERELY outweigh the negatives, but that doesn't mean the negatives don't exist (and I haven't even gotten into the acne, weight gain, and hair-growth on my face!). Con for Trikafta, haha.
The thing is -- just like Ross -- we have a right to be frustrated when things are complicated. But luckily, we have an entire community who understands. But when someone outside of the CF community asks me how my new medication is going, instead of saying, "Great," what I really want to say is, "How much time do you have?"
But instead I say that it's life-changing, because it is.