Paul met Debbie

😉

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 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]

I try to avoid overwhelm. So we plan our social visits carefully and sparsely. Always leaving some days of retreat between one event and the next.

Debbie and I have always found these orchestrated interactions with family or friends quite demanding, pleasant as they may also be. We have learned to keep them short and sweet, we seldom let these…[Read more]

Good luck Bailey, we hope all goes well.

We plan and hope to visit some friends and family in August, some of whom we have’t seen in more than a year. And at present we hope to keep our feet dry, since it has been raining profusely last week and the rivers in our country are filled higher than ever before. Let’s hope the dikes will hold. There…[Read more]

I suggest you stay cautious. Even if figures are good, the virus is not gone. It is dormant and can awake any moment if we let our attention slip. It has become even more infectious than ever.

Here in the Netherlands things were really going well, with many restrictions and a lot of vaccinations (1 million every week) infections were down to 500…[Read more]

Talking about the number of cases: I was just browsing the news, statistics of a 1800% rise (!) in covid infections in two weeks time.  This is no typo.

It happened after the Dutch government lifted almost all restrictions on the 26^th of June and the minister of health encouraged young people to go and party from day one after their…[Read more]

Thank you Jenny, for pointing at this. It is an interesting attempt to visualize the risk of getting infected by covid in certain situations.

However, looking at it closer, there are a few remarks to be made.

First of all, filling in the 9 “risk-blocks” is largely subjective and depends on the assessment of the user personally. For instance, the…[Read more]

Thanks Jenny, my pleasure!

I have been brought up by parents that lost a child with cf, because of measles (and pneumonia). They were of course very keen and strict about preventing infection for me, being born later.

So I was natural with 6 feet apart even before it existed. It is buried deep into my conditioning and I don’t mind. It suited me very well my whole life and…[Read more]

Ah yes, certainly. The mind is blind. It can wind itself up for anything that it feels energized by – positive or negative alike. It’s our job to stay present with that. Just allow the feeling to arise and stay with it without any judgement. Observe it. The mind just wants to be acknowledged, to feel heard. With just a little compassionate…[Read more]

Wow, that’s good to hear Jenny, thanks for sharing!

Seems like Trikafta is working very well in your sinuses as well.

I had many ethmoidectomies, and every time the system started to inflame again quite soon after surgery indeed. After a while, they had taken out so much ethmoid that it didn’t regrow, but of course it is so much better if the…[Read more]

Hi Tim,

I concur with you that cftr defects have influence in many parts and processes in the body and not only in lungs and guts. We should however also consider that there are many entirely different types of chloride channels and they perform different functions in different cells of the body. Cftr is only one of them. So I gather a cftr…[Read more]