Topics

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
Crispr Cas 9
Hello, unfortunately our two daughters (7 years and 7 months) suffer from CF. We are in very good care and both girls are fit and stable. Some days ago my physician wanted to know something about the health status of our girls. He mentioned also Crispr Cas and was interested in how far the actual state of research is concerning CF. I had alreday heard about it, however did not pay too much attention to the topic (ethics, no information on usage in the media, no reports, no information from the CF physicians of our daughters)... My physician, however, has a different opinion on it. Due to a missing intervention into stem cells, therefore the genetic material of a human being, this method would not fall under the ethic law. Only mutated DNA sequences would be "cutted out". Especially in case of herited diseases he regards this genetic scissors to be promising. However this seems to be very sensibel, if there are not yet any irreparrable damages (that means in case of CF e.g. of the lungs). I now read about Ulm (city in Germany), however a real Status Quo I could not find. How is your state of knowledge here concerning the usage of the genetic scissors, chances? We of course do not want to miss anything in case of our girls. Many thanks for your answer.
03.04.2017
Sweat test and diagnostic algorithm
Hello dear team, there are patients who had a negative sweat test and diagnostic algorithm, however the function of the pancreas is not given anymore and the course of the illness is like in CF patients. Pneumonias, infections, etc. Both of my children are in the meantime 27 and 28 years old, however acutally these investigations had been done to one of them and showed, that the chloride channel was functioning. However all other symptoms favour CF. I am a bit irritated with the diagnosis of CF after such a long time. We have been told, that it could not be CF. Many thanks for your help.
03.04.2017
Sodium- and chloride values not clear
Our 16-year-old daughter had a sweat test done, because her height is only 1.48 cm (I myself have only 1.56cm height). The sodium value was 68 and the chloride value 39. We have had these values alreday for the second time. She however does not have any symptoms, in spite of panic attacks with dyspnea from time to time. Half a year ago, the pancreas has been investigated, the values were super. And x-ray of the lung had been done and this was not suspicious, they said that this however has no meaning. Are there other reasons why these values are increased? The physicians do not seem to be too worried, however, me and my daughter, we are! Best regards,
03.04.2017
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