Topics

child with cystic fibrosis and airplane
Hello, I have a 1 year-old child with cystic fibrosis and we want to fly this summer to go to Corsica. Should we take special precautions? For now it was never cluttered and saturation is still 99. Thank you.
13.08.2013
E.coli
Dear expert team, I am 47 years old, CF, and contracted E. coli in the lungs. A first i.v. treatment approach with Cefotaxime reduced the germ count but that was it. Now I am supposed to inhale Colistin, E. coli is sensitive. I also take Amoxiclav against staphylococcus aureus that I have had for as long as I can remember and which only seldom causes problems. Is it possible that E. coli disappears completely? My lung function is very well and currently I am not feeling sick. I do not know what happens in case of a flue like infection with this mixture of germs since I have not had this situation so far. Is it possible to say in a general way which damage is caused by E. coli in the lungs? (I am aware of the problems regarding resistence and transmission to other bacteria). Is there a danger to transfer the germ to the partner by kissing (diabetes patient). Many thanks and best regards, U.
12.08.2013
Use Nasonex® in Pari Sinus?
I had a surgery due to many nasal polyps (adenoids) and am now using Nasonex® (nasal steroid spray), nasal douche and Pari Sinus as recurrence prevention. Can I inhale Nasonex® with the Pari Sinus? Many thanks and best regards, I. J.
12.08.2013
Muscular dystrophy
What is the latest news about drug PTC124 (Ataluren) ? and does medication proved its effectiveness in the treatment of muscular dystrophy? I heard that the drug will be available at the end of 2013 or the beginning of 2014 Is this true? I do not know if it has been the answer to this question But I hope that you answer me Please tell me I'm worried for this And I wish you success thank you for what you are doing of an effort
12.08.2013
CF contact with chest infected person
I would like to know if a CF carrier with lung infection can safely spend two weeks in a camping tent in a hot climate with a CF child. Some of the lung infection symptoms we know about are persistent cough, short of breath, weight loss, overall weakness and a past history of pneumonia and been on a holiday in Southeast Asia a couple of years ago. The person is currently taking antibiotics whilst doing some test to establish what is the source of the problem. Sorry about the vagueness, but that is all what we are told so far. Please advise Thank you
12.08.2013
temperature of pool water
From what temperature on we speak about subtropical swimming pools? What is the maximum temperature ?
12.08.2013
Ionic exchanger as a water softening device for the water used in the house
Hello, We do have extremely calciferous water here. Our neighbours had a water damage now for the first time because of the calcination of the water pipes. I am wondering if the installation of an ionic exchanger is possible. Short description of its function: Calciferous water flows into the softener and there, the chalk is bound to the exchanger resin by the ionic exchanger. The “exhausted” exchanger resin is regenerated with a sodium chloride solution; after regeneration, the ionic exchanger resin is rinsed thoroughly and disinfected (how ever that is supposed to happen). The salt-chalk-solution goes into the wastewater sewage. The salt is added in form of granulate by the user. Unfortunately, I a have not found out yet how the brine (salt water) is produced in the exchanger, if the salt remains dry inside the storage container until the resin is rinsed with “fresh” brine about every three days. This brings up the question of a potential germ risk. Are there experiences with such devices? Are you aware of any CF family that has such a device? Thank you very much for your information. Many greetings, K.
12.08.2013
Pseudomonas in the lake / retention pond (storage reservoir)
Hello, We would like to move to another apartment and I am a CF patient. We looked at an apartment which is about 30-40 meters away from a retention pond and about 100 meters away from a lake. Is there a danger to be colonized with pseudomonas (by inhaling) if we moved to the new apartment? I had pseudomonas once. But now it is eradicated. Thank you for your help. Many thanks!
12.08.2013
Rare germ Inquilinus limosus
Dear expert team, My son 11 year-old son, suffering from CF, has been diagnosed to bear the germ Inquilinus limosus. (Apart from that he is from time to time colonized with Staphylococci, Candida or Aspergillus). As this germ seems to be very seldom, some statements contradict, therefore I ask for your advice. At first I would like to know if a treatment is necessary even if it does not cause any problems up to now? Lung function results up to now are about 110-120%, no increased mucus production, no cough. Furthermore I would like to know, how this germ has to be regarded concerning rehabilitation, physiotherapy or hospital stays. Are there any restrictions? I am looking forward to an answer, Yours sincerely, Daniela H.
12.08.2013
National laws for CF patients
Dear representative, I know that in Italy there is a law that governs the CF treatment clinics and other aspects. Are there other similar laws in different European countries? We would like to establish an Israeli law, and for that we wish to gather all equivalent laws. Thank you in advance.
12.08.2013
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