Cystic Fibrosis News Today Forums Forums Support Groups Adults​ ​With​ ​CF The thing I don’t REALLY want to talk about, but feel like I should…

  • paul-met-debbie

    March 2, 2020 at 5:13 pm

    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 weeks ago when we saw this coming, which is good because last week indeed corona visited our region and now things like these are not available anymore.

    For the rest we follow our normal anti-flu precautions like we do every year, only now this protocol will be in place for a lot longer I guess. I think perhaps it will take at least a year before things are back to normal again, after many people get infected and recover (this will be the majority fortunately) to form herd-immunity, and hopefully there is a good vaccine by the start of 2021. There is still a small chance that this outbreak will be contained, but even then it will take some time to vanish completely.

    Normal anti-flu precautions include that we:
    – wash hands more often;
    – wear gloves and shawl when outside (this will be warm in summer …);
    – stay at least 2 meters (7 feet) away from people (except from each other);
    – do not attend mass-meetings like concerts, public transport, parties etc., even family reunions;
    – do not visit large public buildings (musea, hotels, restaurants, large shops, supermarkets), unless absolutely necessary (like hospital, pharmacy, veterinarian: these only with mask on);
    – make sure that our doctor also wears a mask and gloves when attending to us or our pet;
    – (probably) skip the dentist checkup this spring;
    – avoid to touch other than own door handles, bannisters, pay-terminals, mobile phones etc. with bare hands and if so, wash hands and disinfect with alcohol immediately after;
    – have our shopping’s delivered to our home as much as possible, and
    – do not shake hands (or worse) with other people. Tip: it looks very good instead to perform Namaste when greeting or saying goodbye to someone, that’s what they do in India.

    And very important: keep your mind empty and your hart clear.


  • paul-met-debbie

    March 3, 2020 at 6:00 am

    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 “real”.

    Taking these precautions comes from caring for, and compassion with the body and the bodies of others in our surrounding, and basically compassion with the world and respect for the forces of nature.

    Almost all of these measures can be reduced to: “coming back to a more natural lifestyle”. In the early days of homo sapiens, threats like this virus would not stand a chance. A virus like this would exist and occasionally make some isolated victims, and extinguish again naturally soon. But only because we are with so many, cramped together in cities, offices, hotels, restaurants, musea, airplanes, trains, groups, etc. this virus – which is a normal force of nature – becomes our “problem”. But not the virus is the problem, our unnatural lifestyle is.

    So in dealing with this virus, nature teaches us, by showing the extent to which our lives have become unnatural. And it can point us to ways of trailing back our steps to a more simple, compassionate, caring and contemplative lifestyle. It is also fascinating to see, how all kinds of behavior that were deemed to be “necessary” turn out to be not. And the positive effects this has on nature. For instance because there is less traffic, less industrial activity in certain regions of the world, air pollution and CO2-emissions suddenly have almost disappeared there.

    As I am writing this, within a radius of 500 km (300 miles) of our home, tens of thousands of people have been home-quarantined, hundreds of schools and even some hospitals are closed temporarily. One of the most affected regions of Germany is only 20 miles away. Families that are being put in home-quarantine together for several weeks because one of the members have possibly been in contact with the virus, have to work out a different lifestyle, that will bring them more together and causes a lot of creativity to blossom. People start to work from home via internet, children are taught at home etc.

    Suddenly, old habits that seemed to be carved in stone, turn out to be adaptable after all – or even unnecessary. We cannot even imagine all the new and good things that can arise from this. The virus does not respect our unnatural country-borders, which means that governments all over the world have to cooperate closely to develop a global and consistent approach. Suddenly it turns out, that we are all the same on a basic natural level after all, despite our self-imagined differences in language, politics or race. We are equally vulnerable and equally strong.

    But most of all I would like to point to some basic attitudes that we can practice now and should apply always:

    – Trust; not in some specific outcome, but trust in general that whatever happens, is supposed to happen and will turn out the right way – but we don’t know what the right way is.

    – Surrender. Which is closely related to the previous practice. We are not in control of anything, we only think that we can influence the grand scheme, but that is an illusion. Nature happens to us and we are also nature happening itself. Surrender gives relaxation, prevents and dissolves stress (without stress our immune-system optimizes itself) and causes innate happiness to arise. Without stress, we sleep well and conserve and replete our energy.

    These attitudes do not contradict the previous advice about taking precautions. They all go together very well. And together they will make us peaceful and strong at the same time.

    Stay well!

  • paul-met-debbie

    March 9, 2020 at 12:04 pm


    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 to visit the hospital just to “see” their doctor or to talk about anything that also can be done by phone.

    There is actually no case of covid-19 in the hospital at the moment, but still they go for max safety by this. Next month they will inform us again.

    Of course in case any examination (e.g. x-ray or pft) is deemed necessary by the patient or the doctor, we still can make an appointment to visit the hospital for that.

    I think this is wise policy and I am glad with this decision. For many years I followed the same protocol every year when the seasonal flu is around.

    Take care!

  • jenny-livingston

    March 9, 2020 at 12:12 pm

    Paul, thank you for sharing this! I have an appointment next week that I plan to keep, but I will definitely be asking what plans are moving forward. How does my hospital/clinic intend to handle things as circumstances (potentially) get worse? We have confirmed cases here in Utah where I live, so I am extremely curious to know how we’ll move forward. Thanks again for the information, and please keep us updated.

  • paul-met-debbie

    May 2, 2020 at 8:14 am

    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 some funds to supply cf patients in the Netherlands (there are about 1000) with a portable home electronic PFT device. Via an app this can display some vital lung function parameters such as FEV1, PEF, FVC, FEV1/FVC ratio, FEV6 and FEF25-75 to a smartphone, which can be easily shared with the hospital. It will be delivered at home via the cf-centres in a couple of weeks.

    I guess they are going to supply us with the MIR Spirobank smart, because this is the picture they show with the announcement.

    I think this is a smart idea and thought it might be good to share. Perhaps other patients in the world could bring up the idea with their cf centre as well.

    I have used a device like this (a bit simpler, it only measures FEV1/FVC ratio) for quite some time already because I don’t like PFT tests in the hospital for a lot a reasons. So I can recommend testing PFT at home from my own experience.


  • kevin-schaefer

    May 4, 2020 at 9:28 am

    Thanks for sharing Paul! I actually do PFTs as well for SMA, as my disease causes respiratory issues. It’ll be really interesting to see how COVID affects things like this and other medical appointments in the long run.

Log in to reply.