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Trikafta nearly killed me. Inside of 3 months I was in total liver failure. I was in and out of the hospital 5 times before going in and staying 42 days in intensive care. My entire family, including my devastated husband, had to watch as I waited for an emergency liver transplant. I couldn't walk, couldn't go to the bathroom, I had to relearn to do so much. Recovery was long and continues to haunt me every single day. I've been told they are now studying terrible menstrual cycles and crushing depression- both caused by Trikafta use. I've spoken to two families whose adult children have died taking Trikafta. Lawyers have told me that our trauma does not matter. Not enough patients have died. I've spoken to CF advocates that have told me Vertex Pharmacy is a monster. No one will go after them. Six short months and after my husband was diagnosed with PTSD, they approved this medication for children ages 6-12. No mention of the possible TRUE effects. I know it has helped many, but being told (again) that my medical diagnosis simply isn't important enough... crushing blow for a person, let alone a CF patient. DISCUSS the risks with your team. ALL the risks. I just want someone to LISTEN and CARE and to not hear about this medication killing a child.

  1. We are sorry to hear that happened to you, Paula. Each person has a different experience and I'm glad you feel safe sharing your story here. -Corene (team member)

    1. Hi, I sent you a DM to discuss about Trikafta. The doctors want to put my 10 year old daughter on it - she has 74% lung function and currently only takes three enzymes a day. She is high functioning with a great quality of life.

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