Base

Name

Ron Cook

Nickname

ron-cook

Year of Birth

1952

Gender

Male

Location

Somerset, Kentucky

Relationship

Family

Short Bio

My Granddaughter was diagnosed with CF at age 4 and is 22 now. She was prescribed Trikafta a couple of years ago. Initially there was a dramatic increase in her PFTs and it seemed like it was going to be the miracle we were praying for. However, about two months after starting Trikafta, she started having debilitating mental side effects like increased anxiety and suicidal thoughts. It scared her. She tried to keep taking Trikafta for a while, thinking those side effects would subside.  Her CF Team encouraged her to try just taking the first two pills and not take the evening pill. She tried that and it did not help. Is there anyone else that have had these side effects and were you able to figure out a dosing that worked or did you quit taking Trikafta?

How did you hear about us?

CF Website

How long have you or the person that you are caring for had CF?

22 years

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