Cystic Fibrosis News Today Forums | cfmox | Activity https://cysticfibrosisnewstoday.com/forums/members/cfmox/activity/ Activity feed for cfmox. Fri, 01 May 2026 22:27:57 -0500 https://buddypress.org/?v=2.21.1 en-US 30 hourly 2 39376f35db4dbe9946d9fb139a1c459f cfmox replied to the discussion Have you helped comfort others during their time of need? in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/have-you-helped-comfort-others-during-their-time-of-need/#post-19887 Thu, 26 Jun 2025 01:37:06 -0500 Reply to Have you helped comfort others during their time of need?

Stable on trikafta but lousy lung function still in the 20’s percent, so at we’re moving into the lung transplant phase. And she’s losing her job in July- thankfully I have health insurance, and it looks to be a long haul until she’s able to work again (assuming she has a match in the next months and no guarantee of that of course). So my…

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]]> ef4f04b2e1cb8d04682aa9db933adfdd cfmox replied to the discussion Have you helped comfort others during their time of need? in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/have-you-helped-comfort-others-during-their-time-of-need/#post-19808 Thu, 17 Apr 2025 01:21:38 -0500 Reply to Have you helped comfort others during their time of need?

My CF person is 1 bad cold away from the ICU, no slack in her lung capacity and facing up to starting the process of trying for a lung transplant.

CF is a long game for the caregivers. It profoundly changes the situation. There are the hospital stays, and then there are the other 7 days a week, every week of the month, every month of…

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]]> 7bc415b779a1cba5725ef107b35e9d59 cfmox replied to the discussion New CF modulator in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/new-cf-modulator/#post-19784 Tue, 18 Mar 2025 01:56:31 -0500 Reply to New CF modulator

Trikafta sure is a fancy complicated drug so complicated side effects aren’t surprising. In consultation with her docs we’re easing back into it, at first a half dose, and tapering up to full, while observing the reaction <very> closely. So far she’s not shown other physiological issues- docs are monitoring it.

Her pulmonary function is…

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]]> ffb841d11ed3db38215120ea38008c68 cfmox replied to the discussion New CF modulator in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/new-cf-modulator/#post-19775 Sat, 01 Mar 2025 01:01:52 -0600 Reply to New CF modulator

My wife was diagnosed with CF at 55yrs- no symptoms before that but they are pretty classical now. She’s had a difficult time with trikafta- it radically improved her symptoms but it seems to be triggering substantial depression/anxiety and cognitive effects to the point we’ve had to stop it twice and are back on a half dose to see if she…

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