Paul met Debbie

Gary, you might have missed the fact that Ashley mentioned there was a CVS done, so the genome of the fetus was tested positive on having CF (inherited the CF gene from both parents).
Without a test, the statistical chance of the fetus having CF would have been 25%, since CF inherits recessively. And 50% on being a healthy carrier, 25% on being a…[Read more]

Hi Ashley,

For now I think most important is you make sure your baby is delivered in a hospital that is also a CF centre. A pediatrician who is experienced with CF should be supervising, because sometimes there are complications due to CF that should be recognised and remedied right away after birth.
The specialists in the CF centre will be able…[Read more]

I agree with Stacy that telemedicine can of course never replace in person visits. But it can be very helpful in determining whether or not an in person visit is required. It could reduce the number and frequency of hospital visits, which can make the patients life a lot easier (and safer).

Recently I pointed to a way to do PFT at home, which…[Read more]

Columnist Writes About Slowing Down

It’s Time to Live Slowly

You are the fullness of life!
It is good to hear that Brad has found out the beauty of slowing down. Most people, irrespective of their health…[Read more]

Last week I received a newsletter from the NCFS (dutch cf patients association).

Amongst other things it announced that because of the covid-19 thing, it was likely that patients would not be visiting the hospital for quite some time. This also would mean that no lung functions (PFT) would be measured. To compensate for that, they managed to get…[Read more]

It is good to think twice about going back to “normality” after this Pandemic. For the whole world, and for every one of us (together we are the whole world). How normal was our normality? This little virus shows us with merciless grace how unnatural our living habits have become. We have to do a serious reset and reconsideration of almost all our…[Read more]

I have talked about this before. I said then: No, there is no typical sort of cf, and if there was, it would be wrong. Still this question remains. I will try another approach.
Yes, CF presents very typically – in the way that every patient has his/hers own, typical variant. Like every person is unique, every person with cf is unique too. The c…[Read more]

https://markets.businessinsider.com/news/stocks/arch-biopartners-announces-ab569-phase-i-human-trial-begins-patient-recruitment-and-enrollment-stage-1015631585

Arch Biopartners puts Phase 1 trial of AB569 on hold, will request pre-IND meeting with FDA

They want the FDA to approve the phase I study first.…[Read more]

My favorite way of staying connected is through silence and contemplation.

We can’t not be connected with the world, because we are the world – in the way that we are nature and nature is the world. Only our busy and loud mind is mostly covering up this innate connection completely, so that even those who start looking for it, have trouble…[Read more]

None of the above.

But I thought I’d share some beautiful video’s with you about, what I think, is The fine Art of Home Schooling.

Just watch Paul Barton, an artist living in Thailand, who schools his little daughter Emilie together with his wife amidst the Elefants. Watch him share his passions for pianoplaying, painting, sculpture and…[Read more]

Compliance most of all now means: don’t get infected and stay home!

I can only speak for the situation in the Netherlands now which is becoming nastier every day. It’s not as bad as in Italy, but it might get that way soon if the rate of infections and hospitalizations does not diminish quickly. IC’s are near their maximal (and extended) c…[Read more]

I did not change much to my normal winter anti-flu routine. Which can be found on this forum in answer to several other questions (click on my profile and read my other answers).

The best thing one can do when stuck at home, is “not feeling stuck at home”. It’s all in the mind of course. So, try to feel at ease at home. When this is not the case,…[Read more]

Of course there is a challenge going on now to balance business and health. Social distancing to avoid spreading covid-19 does not go well together with many of the things we have grown accustomed to in our way of living. So on that level it is not difficult to relate to Wendy’s observation.

But I don’t agree with looking only at this level. The…[Read more]

Update:

Today I received an e-mail from my cf-centre in the Netherlands, informing me and other patients that for the next month they are changing all the appointments that require no actual examinations, into phone calls with the doctor. So they think it’s better not to take any chance with the covid-19 and don’t want cf-patients unnecessarily…[Read more]

Well, I am retired now, but I used to be a teacher at the university. I never cared much about money, status etc., but learning and teaching (they are the same actually, learning is teaching yourself) always attracted me. I went to law school because I like to play with language, and even while I was still doing my university study, I was also…[Read more]

You are absolutely right. Without being arrogant, I am quite sure that regarding my own body, I am the best possible medium around. Nature made it that way. That is because I am intuitively in direct and im-mediate contact with all the nerve endings in my every cell. No western or holistic doctor can compete with that. That is not to say that…[Read more]

In addition to my previous post:

These precautions have nothing to do with fear. They are practical measures to handle a potential harmful situation, like driving slowly when the road is slippery. Not handling it well would be reason for fear – but fear is a psychological reaction consisting of thoughts and feelings that basically are never…[Read more]

It’s good that you address this subject, no need to hide from it. It is a clear and present danger especially to high risk groups like most cf-patients belong to, but there is no reason for fear if we use our brains.

I made some small stock of mouth masks (in case I have to visit a high-risk area), hand-alcohol and disinfectant hand soap a few…[Read more]

Well it proves that it is possible to sterilize a nebulizer if you follow the procedures.
The rest of the study is less clear I think. Of course if you don’t get your nebulizer clean, your bugs will be on it. But that does not prove in itself that you get (re-)infected by your nebulizer. Your bugs will be all over the place in your house too. Do…[Read more]

What would you advise any of your loved ones (e.g. your own child) that would mistreat their bodies and neglect and damage their health the way you do by mismanaging their lives so badly? You know the answers, so don’t put untrue questions on the forum. Be honest with yourself and change your ways and desires. If you love yourself and your body…[Read more]