Orkambi Journey with 19 y/o Allan Diagnosed at 4 months

I really wasn't sure how to do this. I am the father of Allan. He is a bit shy to post his own thread and definitely not a YouTube video. So here I come. Hope its Ok to start my own thread. You may post in here and ask questions if you wish, if you have CF, a parent of a child with CF or just curious about CF. I am an open book. I can only put in this thread of what my son tells me. He knows this is being done and I do have his consent. So just a tad bit of background on Allan. He is 19 y/o and he was diagnosed at 4 months old by a Doctor here in Texas. His Normal FEV1 is usually around 85% on a good day. Had a bout of infection a few weeks ago sending his FEV1 to 64% and went in hospital for 5 days, sent home with PICC. Is blowing 81% last week and they are doing 1 more week of IVs almost done Wed he goes back for follow up. Feels better than he did about 3 weeks ago. DAY 1 - Started his Orkambi this morning at 8:15am 2 pills in the AM/PM (Allan does not eat breakfast. Its rare, he is always nauseated) so this is gonna be harder than it looks. Orkambi must be taken with fat containing foods. Spoke with doctor and pharmacist. A glass of chocolate milk it is. This evening where it will be much easier. Allan is different than most with CF. There is no other words for it than his appetite sucks! He has been a picky eater since around 2 years old, the doctor said he will grow out of it..... ya right, more like grow into it. He eats about 500 cal a day if he...
Source: Cystic Fibrosis Adults Forum - Category: Respiratory Medicine Authors: Tags: Adults Source Type: forums