Topics

UV light
Does UV light change the surface of bacteria and can therefore be used as a lamp e.g. after cleaning of the nebulizer for irradiation?
28.04.2017
Women over 35 years / climacteric period
Hello, I am looking for information about the climacteric period in case of CF, is there any information about intake of hormones, Orkambi, transplantation and gain of weight? How does the metabolism change? What does this mean for women with CF? In general I am looking for information around this topic. Many thanks
28.04.2017
Salt capsules
Hello I would like to know if there is an alternative to salt capsules for a 5-year-old CF child because he doesn't tolerate tolerate them. Thank you
28.04.2017
Smell dead animal
Hello, In the classroom of my CF daughter, there is a foul smell: it would be a died animal under the class or in the ceiling. Is the air of the class dangerous for my daughter?
13.04.2017
Pregnancy and aerosol
Hello, Mum of a 20-month-old CF baby, I just learned about my new pregnancy. While waiting for a prenatal test to know if the child is affected, can I continue to administer tobramycin and colistin aerosols (and pulmozyme in the morning) alternately twice a day. Knowing that during aerosol therapy, my daughter is sitting on my knees so I breathe a little the smoke coming out of the mask. Thank you for your reply.
13.04.2017
Pregnancy, Patiente and aerosoltherapy
Hello, I suffer from CF and in the second months of pregnancy. Can I continune my aerosol therapy with rhDNAse (Pulmozyme), colistin and tobramycin? What about the oral antibiotics (azithromycin etc)? Or what about potentailly necessary i.v. therapies? Is this without danger for my baby? Many thanks for your advice.
13.04.2017
Round trip through California
Dear expert team, my daughter (19, CF), is chronically colonized with Achromobater and since February 2016 also with atypical Mycobacteria - Mycobacterium avium. This is at the moment treated under complicated circumstances (partly she doesn't tolerate the antibiotics). She will be finishing school in 2017 and she likes to do a round trip through California. Concerning the medical care etc., we alreday got some information. This would not really be a problem, as long as the health status is stable. However now we got to know when asking our CF center, if something would speak against it, that especially California (especially the coast region) as well as Florida (even more) are "contaminated" with the appearance of atypical Mycobacteria and that they dehort rather a trip there (this data was seemingly presented at the North American CF congress). I have to say, that we never regarded our journeys (and that have been quite some until then) from this standpoint. Where do I get such data from? As a consequence, one would have to get information if also a jounrey to e.g. South Italy, Spain or Thailand could harm chronical ill people, as nearly all over the world there are bacteria that could harm CF patients. In spite of this, one is really insecure as soon as one has the information and asks oneself, if one should risk this. Especially I as a mother. On the other hand, she already has a colonization with non-tuberculous Mycobacteria (NTM) and we also do not know, where she got it from! My daughter is at the moment quite frustrated, as she wanted to do this journey in a quite good health status and now she does not really dare anymore! Especially she has now worries about all other locations, too. How do you judge the data, would you also dehort from the journey due to the facts and, after all, where do we get the data for the future trips to other places from? Many thanks for your efforts, D.
13.04.2017
Coughing blood
What to do if suddenly much blood is coming out when coughing?
03.04.2017
Drain gutter for walk-in shower
Dear experts, recently our bathroom has been renovated. A walk-in shower has been installed with a drain gutter (similar to those in swimming-pools). The drain gutter is covered. However, the siphon is quite large and water is standing in it. There are no windows in the bathroom. Can the stagnant warter be dangerous for our daughter? Should she avoid the bathroom? Many thanks for your answer.
03.04.2017
Flight without pressure cabin in 6200 meters altitude
Dear experts, I am 30 years old, suffer from CF and will go on holiday next summer to Alaska. There I would like to do a scenic flight to Mount Denali. The flight duration is about 2.5 hours and is done in a plane without pressure cabin. One flighs at altitudes of 6200 meters, however one is wearing for about 30 minutes an oxygen mask. Furthermore, there is the possibility of landing on a glacier of about 30 minutes, however here I do not know at with altitude this takes place. Are there any concerns because of my CF? Is there an altitude limit for me for the landing? I have a stable FEV1 of 70% and do running 5 times a week. Many thanks for an answer, Regards, V.
03.04.2017
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