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Kaftrio and pseudomonas

Hello everyone.
I hope all are keeping well.

My son started kaftrio a month and a half ago today, he never had any 'purge' as they call it.... Where you constantly cough mucus up for a few hours as he is only 10 and touch wood been pretty well. Hes had a few pseudomonas infections that were treated in and out of hospital.
Leo plays football at a very high level for his age playing for Rotherham United and England 🏴󠁧󠁢󠁥󠁮󠁧󠁿.... He makes me so so proud each and every day as he is also t1 diabetic, and also had to deal with the loss of his mother a couple of years ago.
My question is, he was in hospital (perfectly well) but contracted pseudomonas and the cough would not shift so three weeks of Ivs it took to combat this, having left hospital a few weeks later he started kaftrio, the triple combination therapy to treat the condition. His cough was none existent, and he looked so very healthy too lots of colour in his face and had bags of energy. However, this past week he's had phlegm build up in his throat which he was constantly trying to clear, this then led to a terrible barky cough!!!!... Again!!!!!
He had one night of extreme high temperature but after giving him calpol he was fine..... He maintains he feels absolutely fine in himself but this cough, although not frequent is very wet when he does cough.
It's not like before where he was awake most of the night coughing and after football was cough cough coughing for an hour or so, this time it's a cough every now and again but it is so wet. May be the kaftrio keeping it at bay.
If this is another episode of pseudomonas (cough swab submitted) doesn't this new drug kaftrio help with such things??... As in should it prevent this?

Many thanks
Paul
Single dad to Leo age 10 with cystic fibrosis and T1 diabetes

  1. Hi Paul ,


    Thank you for reaching out and sharing how your son is doing. He sounds like a true CF warrior and you must be so proud of him. I'm sure you have already spoken to his CF care team and I'm curious to hear what they said about his cough. I know that Kaftrio has been helpful for our other community members, but again, everyone is different.


    I'm glad to hear that his cough has improved and hasn't been bothering him as much as it has in the past. I hope you're able to connect with his care team to find out more information about this treatment.


    Please reach out anytime – we're here for you!


    Best,
    Sarah, Cystic-Fibrosis.com Team Member

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