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Much research and rethinking continues to be needed. Why are so many PWCF on Trikafta (T) having headaches, insomnia and other neuro signs?

I suspect this is because T is affecting electrolyte levels in the brain cells. Our researchers need to look closely into this and not just dismiss it as a ‘side effect’. Also the effect of T on other cells -…[Read more]

Sorry Jenny that you have had such ‘side effects’.  As they say in Swahili ‘pole sana’ – a term of condolence that you may use in all circumstances from stubbing your toe to losing your mother-in-law.

Not surprising to see such side effects considering the breadth of effects that the faulty Chloride transport in CF may be expected to have.…[Read more]

Next culture grew Citrobacter freundii which is resistant to Amox/clav and Cephalosporins but sensitive to Trimethoprin.

I suspect that it was previously present but identifies a as ‘normal faecal flora’ and as such considerred not a cause of UTI. Its response to Bactrim which contains T was good.

Shows value in identifying even what may be…[Read more]

Thanks so much for this response, Paul. It’s been an interesting journey; listening to my mind and body have been critical. Thanks also for the reminder to not tell myself stories. I need to drop any expectations and refrain from clinging to any story.

The lack of sleep has been a huge problem for me. For the first 5-6 months after starting, my…[Read more]

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Thank you very much for sharing this, Jenny, I am sure this will be very helpful for many users.

I think it is a wise decision to make a change in your health-balance if you are not happy with it, and since trikafta is probably one of the more influential elements in this balance there is a lot to be said for starting there.

I hope this will…[Read more]

Hi Judy, it is all in the blogs, just search for “Sunday Morning” in the top right search field of this page. I hope you enjoy reading them all!

Cheers,

Paul

I have not read these blogs before.  What county do you live in?  Who has CF?

William, thanks! This is a great reminder. I used to do this, but had forgotten. I’ve got a clinic appointment today actually, so I’ll be asking for a letter.

Be up front with TSA that you have a medical device and medicine with you. Also, it’s really important to have a Doctor’s note with you. Yeah, they’re unable to look at the letter, but having a physical copy on hand let’s them know it’s serious.

I left home to study at university when I was 18. This was the perfect moment to switch my pediatrician for a pulmonologist and start managing my own cf-agenda fully. I didn’t start nebulizing until 25.

Before that, I always managed my own pills as long as I can remember, although my parents took care of prescription refills until I left the…[Read more]

No ability to smell since 4 yrs ago.   I have my husband season salt and pepper being careful on salt as I have basic taste.. sweet salt hot sour bitter.    It’s cooking by memory for me.  I must always tell restaurants to use minimal salt on steaks or that becomes an overwhelming distasteful event for me.

Your level of preparedness and pre-surgery organization is something to be admired. I hope the prep pays off and your recovery is smooth.

My to-do list today includes all the things I haven’t done while I’ve had family here. Housework, some writing and catch up on projects I’ve neglected, laundry, etc. I’m also preparing for a big doctor’s…[Read more]