Let's Cure Cystic Fibrosis!
Drew Dotson
Fundraising for Atlanta Great Strides
Drew Dotson
This is long, but if you're invested in the quest to cure cystic fibrosis, it's worth reading—in my humble, writerly opinion. If you don't want to read it, it basically says that I have been struggling and that we need a cure. Go ahead and make your donation. Thank you.
For those who want to keep reading, buckle up, baby!
My Current Status
A few weeks ago, I sent this message to my doctor.
I think I'm at the end of my Trikafta journey. Before I discontinue, I'd like to get some bloodwork done, particularly to gauge current liver enzyme levels and hormone levels (specifically estrodial, progesterone, testosterone, and any others that were a bit wacky last Fall). Can we also test any neurotransmitter levels that could indicate brain abnormalities resulting from Trikafta?
The bloodwork confirmed that so many values are out of whack, many of which are crucial to mood, cognition, and mental health. And, for me, those are non-negotiables when evaluating my quality of life.
Given how life-changing this medication is, you may be curious how I could possibly conclude to discontinue something that has kept me off of IV antibiotics for more than four years—something that has all but eliminated my cough and my sinus issues.
So, allow me to explain.
Getting to this Point
First, I had to start Trikafta gradually because, when I was in the Phase III trial, I experienced drug-induced liver issues. (Now, in retrospect, I think my liver was telling me something important. Sorry, liver. ANYWAY.) I don't know if I had a honeymoon period with the drug or what, but after about a year of taking my already-modified dose, I realized it was extremely difficult to focus—and that I was having sporadic symptoms of anxiety and depression, unlike anything I'd experienced before.
Things have gotten gradually worse over time. I've decreased the dose even further, but side effects continue. I recently joined a forum of other CFers taking this medication, and many talk about how this drug has "ruined their life." As other shared their various troubles related to the drug, one person with CF said it best: We are the test subjects. And we are.
The drug was understandably fast-tracked by the FDA (a necessary entity) given its health-changing abilities. Trikafta truly saved the lives of countless people who were fighting end-stage CF. For that, I am thankful. Now, though, as more and more patients suffer devastating side effects, there's still a lack of acknowledgement since these side effects "weren't observed during the trials."
The Studies
Now, various studies have documented possible neuropsychiatrist affects, including low mood, anxiety, depression, sleep disturbances, cognitive difficulties, brain fog, and emergent suicidal thoughts.
Last year, a study was published that followed 197 children in France, aged 2 to 5 years, who started taking the drug. Here are some excerpts from the study:
At month 1, 93 (47%) of 197 children were reported to have sudden changes in behaviour, reported to be abnormal for the child by parents, that was suspected to be related to ETI on the basis of the temporal relationship of receipt of the drug regimen and the occurrence of behaviour, and absence of an alternative explanation.
The amplified or new onset behavioural issues were attention-deficit hyperactivity disorder (ADHD; 31 [33%] of 93), irritability (16 [17%]), and mood disorders (11 [12%]), such as abnormal sadness (ten [11%]) and suicidal ideation (one [1%]).
THESE ARE PRESCHOOLERS. COME ON. HALF OF THEM HAD OBVIOUS PROBLEMS AFTER STARTING THE DRUG!
The research article documented many of the justifications [ahem, gaslighting techniques] used to explain the change in mental health:
Patients who undergo successful treatment for cystic fibrosis [i.e., Trikafta] might have difficulties adapting to their new life paradigm, in terms of the shift from a status of patient to that of asymptomatic healthy individual. In addition to this shift, some behavioural issues might also be discovered that were not previously recognised or not considered while they had symptomatic cystic fibrosis.
YEAH, I'M SAD BECAUSE NOW I'M HEALTHY. SHUT UP.
At this point, I feel like I've exhausted my options. My gut tells me the experiment is over.
Yes, I've Tried to Combat These Side Effects
i.e., For the Doubters
I have tried everything I can think of. Yet I've been told restorative yoga will do the trick. I've been told that I need to eat more protein. I've been told there are YouTube videos that can help me. No. This is an actual, psychiological problem.
I might sound defensive and, in a way, I am. I've spent years trying to explain that this isn't grief. This isn't standard depression or anxiety. This is a beast of its own.
Here are some examples of things I've done:
Yet here we are.
Some Written Reflections from the Past Few Years
(And guess what? They're not happy updates!)
February 2023
All I want to do is sleep. Be alone. I just want to be me again. At this moment in time, I feel like I’ll never be okay again.
May 2023
I think I'll call the psychiatrist. Maybe my brain just needs a little something extra to kick it into gear. Maybe it doesn't have to be this difficult to navigate the day.
December 2023
Concentration has become a daunting task. I can’t recall another time in my life when I’ve had such difficulty holding a thought. Sometimes a thought slithers away right before it exits my mouth. And though I try to grab it with my bare hands, it’s faster than I am. Then I spend the next while wondering what the thought was, wishing I could locate it—until I finally move on, hoping it will find its way back to me.
December 2023
What if I’m being killed by a miracle? Last week, a CF influencer (for lack of a better term) posted about the devastating effects Trikafta has had on his mental health. Now I’m convinced that the drug is the root of my problems. I’m surprised it hasn’t crossed my mind before, but perhaps that’s because it’s been such a miracle that my brain (and heart) doesn’t want to believe there could be a connection. But now, almost a week later, I’m damn near certain that this drug has caused a lot of my mental health issues over the past eighteen months or so.
May 2024 (in email to researcher)
October 2024
Oh lord. Things have not been good. The mood stabilizer hasn't changed anything. I had a few terrible mental health days last month. Like, "Should we go to the ER?" bad. After that, I contacted the doctor about going off Trikafta completely, but requested one last thing: hormone testing. I got that done last week and some of the levels are BUSTED. I have almost no estradiol, which can apparently have devastating effects on mood. This has given me hope that maybe there's a world where I can have decent physical and mental health at the same time.
Sadly nothing has changed. I feel in my gut that this drug is wrecking me, and I've not even covered other bodily systems. So, where does that leave us?
WE NEED A CURE!
The advancements have been amazing. I am grateful for the new drugs and the positive impact they've had on many people in the CF community.
But I've realized I'm not one of those people. My physical health has been great, but my mental health has been garbage-like.
I don't want to go back to life with CF, but this is no way to live. What we REALLY need is something that corrects CF at its most basic level—something that works for the ENTIRE CF POPULATION, as there are people who are ineligible for drugs like Trikafta.
There are a whopping 14 GENETIC THERAPIES in the development pipeline. THIS is what the CF community needs.
I appreciate all the support over the years. Your donations have kept me alive, plain and simple. But now, as I say goodbye to what I hoped would be my miracle drug, we're fundraising for what comes next.
Please consider making a donation. I know life is extra expensive right now, so any amount is the perfect amount.
*** P.S. I post updates regularly at www.drewdotson.com. Subscribe to receive email notifications! ***
For those who want to keep reading, buckle up, baby!
My Current Status
A few weeks ago, I sent this message to my doctor.
I think I'm at the end of my Trikafta journey. Before I discontinue, I'd like to get some bloodwork done, particularly to gauge current liver enzyme levels and hormone levels (specifically estrodial, progesterone, testosterone, and any others that were a bit wacky last Fall). Can we also test any neurotransmitter levels that could indicate brain abnormalities resulting from Trikafta?
The bloodwork confirmed that so many values are out of whack, many of which are crucial to mood, cognition, and mental health. And, for me, those are non-negotiables when evaluating my quality of life.
Given how life-changing this medication is, you may be curious how I could possibly conclude to discontinue something that has kept me off of IV antibiotics for more than four years—something that has all but eliminated my cough and my sinus issues.
So, allow me to explain.
Getting to this Point
First, I had to start Trikafta gradually because, when I was in the Phase III trial, I experienced drug-induced liver issues. (Now, in retrospect, I think my liver was telling me something important. Sorry, liver. ANYWAY.) I don't know if I had a honeymoon period with the drug or what, but after about a year of taking my already-modified dose, I realized it was extremely difficult to focus—and that I was having sporadic symptoms of anxiety and depression, unlike anything I'd experienced before.
Things have gotten gradually worse over time. I've decreased the dose even further, but side effects continue. I recently joined a forum of other CFers taking this medication, and many talk about how this drug has "ruined their life." As other shared their various troubles related to the drug, one person with CF said it best: We are the test subjects. And we are.
The drug was understandably fast-tracked by the FDA (a necessary entity) given its health-changing abilities. Trikafta truly saved the lives of countless people who were fighting end-stage CF. For that, I am thankful. Now, though, as more and more patients suffer devastating side effects, there's still a lack of acknowledgement since these side effects "weren't observed during the trials."
The Studies
Now, various studies have documented possible neuropsychiatrist affects, including low mood, anxiety, depression, sleep disturbances, cognitive difficulties, brain fog, and emergent suicidal thoughts.
Last year, a study was published that followed 197 children in France, aged 2 to 5 years, who started taking the drug. Here are some excerpts from the study:
At month 1, 93 (47%) of 197 children were reported to have sudden changes in behaviour, reported to be abnormal for the child by parents, that was suspected to be related to ETI on the basis of the temporal relationship of receipt of the drug regimen and the occurrence of behaviour, and absence of an alternative explanation.
The amplified or new onset behavioural issues were attention-deficit hyperactivity disorder (ADHD; 31 [33%] of 93), irritability (16 [17%]), and mood disorders (11 [12%]), such as abnormal sadness (ten [11%]) and suicidal ideation (one [1%]).
THESE ARE PRESCHOOLERS. COME ON. HALF OF THEM HAD OBVIOUS PROBLEMS AFTER STARTING THE DRUG!
The research article documented many of the justifications [ahem, gaslighting techniques] used to explain the change in mental health:
Patients who undergo successful treatment for cystic fibrosis [i.e., Trikafta] might have difficulties adapting to their new life paradigm, in terms of the shift from a status of patient to that of asymptomatic healthy individual. In addition to this shift, some behavioural issues might also be discovered that were not previously recognised or not considered while they had symptomatic cystic fibrosis.
YEAH, I'M SAD BECAUSE NOW I'M HEALTHY. SHUT UP.
At this point, I feel like I've exhausted my options. My gut tells me the experiment is over.
Yes, I've Tried to Combat These Side Effects
i.e., For the Doubters
I have tried everything I can think of. Yet I've been told restorative yoga will do the trick. I've been told that I need to eat more protein. I've been told there are YouTube videos that can help me. No. This is an actual, psychiological problem.
I might sound defensive and, in a way, I am. I've spent years trying to explain that this isn't grief. This isn't standard depression or anxiety. This is a beast of its own.
Here are some examples of things I've done:
- Weekly therapy appointments, daily meditation and exercise (just stating the obvious go-tos)
- Increasing anti-depressant/anti-anxiety medication (many times)
- Changing anti-depressant/anti-anxiety medication (many times)
- Going off anti-depressant/anti-anxiety medication
- Adding a mood stabilizing drug
- Adding a pill to supplement hormone levels
- An eight-week program of 15+ hours of therapy each week
- Neurofeedback sessions
- Eye Movement Desensitization and Reprocessing (EMDR) therapy
- Brainspotting sessions
- Aural acupuncture
- Emailing with authors of research articles (many times regarding the neuropsychiatric issues associated with the drug
Yet here we are.
Some Written Reflections from the Past Few Years
(And guess what? They're not happy updates!)
February 2023
All I want to do is sleep. Be alone. I just want to be me again. At this moment in time, I feel like I’ll never be okay again.
May 2023
I think I'll call the psychiatrist. Maybe my brain just needs a little something extra to kick it into gear. Maybe it doesn't have to be this difficult to navigate the day.
December 2023
Concentration has become a daunting task. I can’t recall another time in my life when I’ve had such difficulty holding a thought. Sometimes a thought slithers away right before it exits my mouth. And though I try to grab it with my bare hands, it’s faster than I am. Then I spend the next while wondering what the thought was, wishing I could locate it—until I finally move on, hoping it will find its way back to me.
December 2023
What if I’m being killed by a miracle? Last week, a CF influencer (for lack of a better term) posted about the devastating effects Trikafta has had on his mental health. Now I’m convinced that the drug is the root of my problems. I’m surprised it hasn’t crossed my mind before, but perhaps that’s because it’s been such a miracle that my brain (and heart) doesn’t want to believe there could be a connection. But now, almost a week later, I’m damn near certain that this drug has caused a lot of my mental health issues over the past eighteen months or so.
May 2024 (in email to researcher)
My mental health continues to deteriorate. Here are my general symptoms:
- Intense mood swings—sometimes feeling almost euphoric, other days having such a low mood that I can't stand to be around myself and try to sleep instead
- Racing mind that comes and goes, often moving from one to thought the next before I even know what's happening
- Difficulty focusing and meeting work and personal goals
- Forgetfulness/memory issues, constantly asking my partner what I was going to do, whether I took my enzymes 30 seconds ago, etc.
- More recently, I sometimes think I see bugs or things out of my peripheral vision but there's nothing there (kinda scary). Or I'll ask my partner, a singer, if he was just practicing and he wasn't.
October 2024
Oh lord. Things have not been good. The mood stabilizer hasn't changed anything. I had a few terrible mental health days last month. Like, "Should we go to the ER?" bad. After that, I contacted the doctor about going off Trikafta completely, but requested one last thing: hormone testing. I got that done last week and some of the levels are BUSTED. I have almost no estradiol, which can apparently have devastating effects on mood. This has given me hope that maybe there's a world where I can have decent physical and mental health at the same time.
Sadly nothing has changed. I feel in my gut that this drug is wrecking me, and I've not even covered other bodily systems. So, where does that leave us?
WE NEED A CURE!
The advancements have been amazing. I am grateful for the new drugs and the positive impact they've had on many people in the CF community.
But I've realized I'm not one of those people. My physical health has been great, but my mental health has been garbage-like.
I don't want to go back to life with CF, but this is no way to live. What we REALLY need is something that corrects CF at its most basic level—something that works for the ENTIRE CF POPULATION, as there are people who are ineligible for drugs like Trikafta.
There are a whopping 14 GENETIC THERAPIES in the development pipeline. THIS is what the CF community needs.
I appreciate all the support over the years. Your donations have kept me alive, plain and simple. But now, as I say goodbye to what I hoped would be my miracle drug, we're fundraising for what comes next.
Please consider making a donation. I know life is extra expensive right now, so any amount is the perfect amount.
Let's cure CF.
*** P.S. I post updates regularly at www.drewdotson.com. Subscribe to receive email notifications! ***
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