Day 40 of Trikafta:
I have reduced the enzymes that I take and have done so the last 4 days. Obviously don’t try this at home without a doctor’s permission. So far, no I’ll-effects. People with CF often need enzymes to digest fats. I’ve been taking enzymes since I was very young when my mom mixed the granules in apple sauce.
In other news, I started antibiotics a few days ago due to a bad cough which is not nearly as bad as it normally would be. It’s the new normal for me. I could tell I was congested though and Ethan had a bad cough so I wanted to be proactive.
Finally, one side effect of the medicine I’m having is lack of sleep. I usually nap an hour a day, fall asleep by 11:30 at night and wake up by six. Now I don’t fall sleep until after 1 AM and wake up at 4 AM and then fall asleep at 5 AM and wake up at 7 AM. On the bright side, I’ve caught up on infomercials.
All is good overall. Less coughing means more energy and that means life is great.
Happy New Year everyone.
Andy
I also had trouble with insomnia. Called my doctors at Johns Hopkins and they told Me to take the nighttime dose earlier. I was doing 10 AM and 10 PM. I now do 10 AM and 8 PM… It worked!!!
I am really trying to read as many”Trikafta Journeys” as possible. Noah turns 12 on 6/19 and I am truly counting the days. He is currently on Symdeko and takes enzymes, however, he must have some absorption because we haven’t increased his dose since he was 3 and he now weighs 150lbs. I am anxious to see what side effects, of any he will have. I am grateful his birthday is in the summer and I can monitor him closely and he won’t be in school in the beginning stages of taking it!
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