I remember the tears that started to well up in my eyes when I learned that Trikafta had been approved. My cystic fibrosis doctor had been telling me about how life-changing this drug was going to be and I was thrilled that it had received FDA approval.
I had heard about all the good things this drug was going to do -- improve lung function, enhance quality of life, increase energy and weight gain, and cause fewer CF exacerbations and less coughing. I was ready. I had been on Symdeko® for about two years and although it drastically improved my quality of life, Trikafta was supposed to be even better.
I started taking Trikafta and within 12 hours what I've heard called the “CF Purge” began -- bringing up a lot of mucus. Within a few days, that was finished, and the most noticeable change was my cough -- or lack thereof. I couldn't believe it. I remember asking my husband almost every night if he had heard me cough that day. It was so crazy. My lung function shot up -- 15 percent in just two weeks.
I had so much energy. I had been consistently going to the gym for the past four months and within the first couple weeks of Trikafta, I was doing something I hadn't done in more than seven years -- I ran an entire mile without stopping. This drug was everything I had hoped for.
Along with all the positive lung-related improvements, I also began to gain weight. My CF care team had said from the beginning that weight gain was experienced by people on Trikafta. I have been about the same weight within a few pounds for the past seven-to-eight years. My BMI was almost always in the healthy range but at the lower end. When I was younger, I had a G-tube to help me gain weight, but I had that removed when I was 19 and haven't had any trouble maintaining my weight for the last 10 years. I wasn't necessarily looking for weight gain. I knew the correlation between a higher BMI (in the healthy range) and improved lung function, so I wasn't opposed to gaining an extra pound or two if it meant keeping my lung function up.
What I wasn't expecting, however, was to gain 10 pounds in six weeks.
I am a college professor, so I was on winter break when I started seeing the weight gain, but it didn't really register with me about how much I had gained until I tried to get dressed for work and none of my work clothes fit. I have never been one to focus on the number on the scale; in fact, the only time I would ever check my weight was at clinic visits. Still, when I started to notice my clothes getting tighter, I decided to jump on the scale just to see if I had gained a few pounds. What I saw shocked me. How did I gain this much weight? How am I supposed to go to work when none of my clothes fit?
The question that I really struggled with the most was, “How could I be so ungrateful to be unhappy with something this drug has done?”
I love everything Trikafta had done for me, except this. Was that allowed? Could I be unhappy with one of the side effects and not seem like a vain individual? I knew there were people in the CF community for whom this drug didn't work or who were struggling to gain weight. How could I be struggling with this?
I knew I needed to talk to my CF care team about it. I am a very open person, and I don't like to keep things from them -- especially because I know their desire is always to help. I have a great relationship with my CF care team, especially my social worker, doctor, nurse, and dietitian. I knew I needed to talk to my doctor about my feelings, but I was worried. REALLY WORRIED. I was afraid he would dismiss my feelings, or worse (in my mind), tell me I was what I feared -- that I was being ungrateful.
I spoke with my social worker and in an hour-long cry session, explained how I was so happy and grateful for this drug, but I was really struggling with the weight gain. She reassured me that my feelings were valid and that I should talk to my doctor.
So, at my next clinic appointment I did just that. I shared my feelings, and prefaced it with my fear, “I need to talk to you about something that has been bothering me, but I'm afraid you're going to dismiss my feelings. I don't need you to fix it, I just need you to know this is how I'm feeling.” When I told my doctor, he listened. He immediately reassured me that this was expected and that I was not alone in my surprise. We talked about how the thing I was struggling with the most was not a number on a scale, because, honestly, I was happy with some of the weight gain, but how I was frustrated that none of my clothes fit. He explained that even though I thought my weight before Trikafta was good, what the weight gain really showed was that my body was actually becoming whole and healthy. For years, my body had been in a state of stress because of my severe lung disease, and now it could be whole. I asked if the weight gain would plateau, and he said it would. We also agreed to ditch the scale at home. And. I was told to go shopping for some new clothes (the dream of most girls, right?).
I encourage anyone with CF who may be struggling to share your feelings with members of your CF care team in a way that expresses your fears or concerns.
Don't shy away from sharing any of your issues even if you think they are not widely accepted. And for the CF care team members who may be reading this, I hope you will be a source of encouragement and provide a safe space for your patients to share their feelings whatever they may be.