Cystic Fibrosis News Community Forums Support Groups Adults​ ​With​ ​CF What are some monthly wins you want to celebrate? March 2026

  • Paul met Debbie

    Member
    March 28, 2026 at 5:33 am

    Congrats William to your 3rd annual anniversary!

    In March 2026 the best thing that happened to me (so far) is that I finally overcame the terrible mental side-effects of Trikafta (Kaftrio is the European name) from which I suffered deeply since starting the drug in 2021.

    I had a manic period (about 10 months) followed by a severe general anxiety disorder, combined with a very deep depression and later also a heavy OCD (obsessive compulsive disorder) as well. Nothing worked. I tried reducing the dose of Trikafta to less then 50%, tranquilizers, antidepressants, behavioural therapy en EMDR. Psychiatrist, psychologist and my CF team were helpless. I was on the verge of giving up life from this and asked for euthanasia. Finally, a tiny dose of Morphine on advise of my pulmonologist I took for dyspnea (only 17% FEV1 left), somehow neutralized the bad influence of Trikafta on my brain and everything cleared up within days (OCD) and weeks (depression and fear). Doctors are baffled.

    I reported about this in an article I wrote for our website. You can download the pdf safely and for free here:

    https://www.parkinsjordaans.nl/paul_debbie.php

    (click on the story nr. 47 to dowload the pdf)

    I posted this earlier, but the link didn’t work as it should have. Now this is fixed, I hope.

    For April, I hope to continue this Renaissance that my wife Debbie and I are enjoying every second!

    I am looking forward to hear about you thoughts about this, and please send the pdf forth to anyone you to think might benefit from it. If you have questions, please contact me on [email protected]

    All the best to y`all!

    Paul and Debbie

     

     

     

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