@sanemoore1
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Sandra Moore replied to the topic For Older Folks with CF + Trikafta in the forum Adults With Cystic Fibrosis 7 months ago
I am 62 and was on Trikafta for 8 difficult months. I saw no improvement in my PFTs and I had many side effects and drug interactions. I had alot of anxiety, shortness of breath and increased headaches, among other things. I tried a lower dose, which improved my breathing and anxiety, but other problems persisted and as I wasn’t seeing any im…[Read more]
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Sandra Moore replied to the topic Keeping track of it all… in the forum Adults With Cystic Fibrosis 3 years, 2 months ago
For day to day inhalation treatments I have created a chart in a spreadsheet. I include a slot for exercise and key meds like my Kalydeco. For the meds that have to be taken at certain intervals I record the time. For everything else I just check it off. I also track my exercise. It’s a good visual of how my week is going and really simple.…[Read more]
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Sandra Moore replied to the topic Sterlizing nebs in the forum Adults With Cystic Fibrosis 3 years, 2 months ago
I have started to sterilize in my Instant Pot. It has a sterilizer feature. I have it set for 12 minutes. I wasn’t sure how long to set it for and wasn’t able to find any expert advise with recommendations. I am curious if anyone else is doing it this way and what timing they use.
I used to use a baby bottle sterilizer and I think the Instant…[Read more] -
Sandra Moore posted a new activity comment 3 years, 11 months ago
Hi Tre. I am a Canadian living in Ontario. I’m 59 and so am an oldster by CF standards. I’m retired (well on LTD really, but I call it retired). I practiced law for 5 years, but moved on to less demanding careers after that. I worked as long as I could, which my doctors would probably say was longer than I should. I have one ΔF508 mutation…[Read more]
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Sandra Moore became a registered member 3 years, 12 months ago
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Hey Sandra! Thanks for registering, I’m Tré, one of the forum moderators. Tell me a bit about yourself!
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Hi Tre. I am a Canadian living in Ontario. I’m 59 and so am an oldster by CF standards. I’m retired (well on LTD really, but I call it retired). I practiced law for 5 years, but moved on to less demanding careers after that. I worked as long as I could, which my doctors would probably say was longer than I should. I have one ΔF508 mutation…
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Probably the reason for you not been told of the side effects is (1) They did not know what to expect themselves and (2) they only saw the effects of TK as affecting the lungs and gut, not realising that all cells are affected.
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Probably the reason for you not been told of the side effects is (1) They did not know what to expect themselves and (2) they only saw the effects of TK as affecting the lungs and gut, not realising that all cells are affected.