My First 14 Days On Trikafta
Through Agony to a Transformed Body
I am 27 years old and I am fighting cystic fibrosis (F508del), a genetic disorder affecting mainly the lungs and the pancreas leading to difficulties in breathing and digestion due to thick and sticky mucus.
On 21st August 2020, the life-changing miracle drug Trikafta (Kaftrio in Europe) was approved by the EMA (European Medicines Agency) offering a treatment for the majority of patients right at the source of all symptoms: the defect CFTR proteins leading to the thick and sticky mucus. On 25th September 2020, I had the privilege to start with this treatment.
In the following, I want to report on my first 14 days on Trikafta.
Day 1
I am with my wife at my mum's for dinner. There are two kinds of pills, two in the morning (elexacaftor, tezacaftor, and ivacaftor) and one at night (ivacaftor). Since the morning pills are more important, I start with the morning pills at night, which you can do when you forgot to take them. We record a video to document this historic event in our lives. You can see me happy and excited with the blister pack in my hands containing the yellow morning pills. I take two with water and wait.
About an hour after intake I do not cough nor is there any mucus to cough up. I experienced the same a few years back when I started with Orkambi. I think it is a psychological thing as it cannot be the pills already since they take some time to take effect. However, I am thrilled to see what is about to come.
Back at home, laying in bed, I have left-sided neck pain and left-sided headache, which might be connected with my sinuses issues. At night, I am up for a few minutes and experienced mucus mobilising in my lungs. This is nothing unusual, but it is not the regular sticky mucus, it is way more liquid than usual. My sinuses also feel more free as I am able to breathe much easier.
Day 2
In the morning, the liquid mucus is still present and my sinuses still feel more free. Later at lunch time, I feel like recovering from sinusitis, of which I had many in the past, when the antibiotics are kicking in and you hear the death cry of bacteria dying inside of you. I experience fatigue, sinus pain, and a headache. In the afternoon when I make an approach to cough, it is a dry and irritating cough. Later, somewhat out of the blue, I cough severely and almost throw up followed by seconds of intense headache. In the evening, I fall ill and begin to develop a fever.
Day 3
The fever made me sweat through two t-shirts at night and I wake up with a bad headache. I feel tired and exhausted. Finally at noon, I manage to make coffee, barely. The well-known sticky mucus comes back, but my nose seems more free than before. I have hot flushes throughout the day. In the evening, my nose is back to normal: clogged. I have discomfort in my bowel on the left side and on the back side.
Day 4
I wake up with the headache and the neck pain again accompanied by tinnitus. Everything else seems as usual — not better. The pain fades after I start baking scones. After, the headache comes back and persists in the background throughout the day.
Day 5
I wake up with the same headache and neck pain accompanied by tinnitus, but less severe than yesterday. We are heading to a city 100 km away. In the car, I notice that the AC is bothering my sinuses, but I do not think much of it. On the way back though, I develop a severe left-sided headache and left-sided sinus pain so much that I have to take painkillers. I close the vents of the AC next to the driver’s seat and keep driving. Later, the pain does not come back.
Day 6
I wake up with yet the same headache, neck pain, and tinnitus, but even less severe than yesterday. My abdomen feels bloated. In the evening, my bowel starts to hurt and I feel like I am going to, quite frankly, explode. I guess my bowel finally starts to change by the drug.
Day 7
I am still very bloated and have that same headache and neck pain again, which fade later. The abdominal discomfort continues throughout the day. The day passing by, I become more and more bloated without being constipated. At 10 pm I feel like an over-inflated balloon. I am so bloated that I have difficulties breathing in a seated position. There now is abdominal pressure in every dimension.
Day 8
I have no headache nor neck pain. My abdomen is much better, not to say almost normal and I do not experience any pain. I have no issues throughout the day until later in the evening when my bowel starts to hurt again. At 9:30 pm my abdomen hurts really bad. At midnight, I have such abdominal pain that I have to take strong pain medication drops to handle the pain and to be able to sleep.
Day 9
The pain accompanies me to the morning and is still too intense to take on the day normally…
Nevertheless today, I want to reflect on the past days and come to realise that I do not have any mucus in my lungs throughout the entire day which is simply unbelievable — no mornings coughing up so much mucus that I am exhausted by the simple act of breathing, no coughing before I am able to speak to my wife normally, no pausing while climbing stairs for some quick coughs.
Besides the good news, I have a horrible night. The pain in my bowel becomes stronger and reaches new levels. It is a cruel encounter having pain in your bowel. It is a deep seated pain in your body and you cannot do much about it. That night, I wake up in agony and return to the painkiller a total of three times: at 12 am, 2 am, and 4 am.
Day 10, 11, and 12
After the morning of day 10, my abdominal pain seems to pass and does not return; my bowel seems to hold its peace through day 12.
Day 13 and 14
On day 13 and 14, my bowel pain seems to be back a bit, but not so much as to be bothered by it. I sincerely hope it stays that way. It fades later on day 14.
It has been three months since I started the treatment and I have never been better. My trimester check up in mid december revealed highly improved lung function parameters: FEV1 increased by 500 ml and FVC increased by 300 ml. Those numbers are just amazing. Also, I am gaining weight, my skin becomes less dry, and I have not been sick since the start of the treatment. And the best of it all: there is no mucus in my lungs throughout the entire day. I rarely cough up any mucus at all; just when I do my therapy there is some, but nothing compared to before.
My body has transformed and keeps transforming.
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