Topics

Pneumothorax
Hello, How do I have to behave after a pneumothorax, thus which kind of exercise is suitable and what should I avoid? Furthermore, I have my drainage been removed a few days ago and since then the scar pinches at each cough and it bubbles, is that normal, as I have also a skin emphysema at this location?
06.05.2015
Achromobacter xylosoxidans
Dear expert team, in diverse treads in the past there can again and again be read, that a colonization with Achromobacter xyl. should be treated according to the individual course. Starting situation: my daughter (17y) is chronically colonized with Achromobacter + Staphylococcus and again and again also with Aspergillus. In general she has quite a good health status, however since the last year still 13% creepingly loss of lung function (distributed over the year) until now, that could not be regained again. And that in spite of constant oral treatment of the diverse germs with amoxicillin + claviulanic acid, cefalexin, cotrimoxazol, colistin (inhal), itraconazol for 4 months for aspergillus + additionally i.v. therapy in august 2014 - this did really bring no success, either! However, she has an allergic reaction to trimethroprim/sufametrol (i.v.) - we could finish the i.v. though - probably it however did not totally work therefore? At the moment all germs are again present, including Aspergillus. Now my questions: my observation concerning symptoms (suspicion of myself related to Achromobacter) are related to a dry unproductive cough, which is followed in the course of time by a produktive hawk. This is consistent with the statements of also Achromobacter-colonized patients on diverse internet platforms. Are these symptoms correlated to Achromobacter known to you? And which drugs could one still try if Trimethoprim/Sulfametrol (is mentioned to be the best against Achromobacter in our CF center) is not working? One can find on diverse patients internet platforms Minocyclin respectively Cefpodoxim orally respecitvely Levofloxacin for inhalation? Is this going to help? Many thanks in advance, I.D.
06.05.2015
Vaccination against pneumococci / measles
Dear expert team, according to the acutal STIKO-recommendations (permanent vaccination commission of the German Robert-Koch institute) children and adults with a special risk (e.g. CF) should get a pneumococcal vaccination. I am a CF patient (52y) with permanent antibiotic therapy with azithromycin. In the year 2009 I have been vaccinated with Pneumovax 23. Unfortunately I had a very strong vaccination reaction (upper arm strongly swollen and painful). Now I have read, that for some years the new vaccine prevenar 13 is licensed for adults, with better tolerance. It would cover the most important germs of this group. Is there the possibility to change to this vaccine now? Measles vaccination It is unfortunately not known to me, if I got the measles vaccination in childhood. From the immunization card originating from GDR times it can not be seen, if it had been given. I did not have measles as a child, either. How important would such a vaccination be, if neceassary at all? Many thanks, S.
06.05.2015
Sport test
Hello, what does the sport test include in the frame of the year-check of CF patients? Is it the 6-minutes-walking test respecitvely running test? Or are there any further "exercises"? And what is there measured in detail? Thank you
06.05.2015
Acting mechanisms of Ivacaftor and Lumacaftor
Hello, I have a question about the acting mechanisms of Ivacaftor and Lumacaftor. In how far do they change the molecule respectively which biochemical processes are involved? Best regards
06.05.2015
Wrong sweat test result because of pretzel?
Hello, my 4-year-old son will have a sweat test next Monday because of the many bronchitis he has had. Today, he ate a pretzel and yesterday some salt sticks/pretzel sticks. Could this cause a wrong result? Furthermore, he inhales Flutide 125 µg twice per day, does this drug has any influence on the test result? Best regards, J.
06.05.2015
Mycobacterium abscessus - therapy with clofazimin?
Dear expert team, In 2010 I have been diagnosed to have beneath Pseudomonas also Mycobacterium abscessus. After long-term i.v. antibiotic therapies the germ was not eliminated. It causes hard problems. Since August 2014 the infections occurred more and more often and in the lung abscesses developed as well as increasing bronchiectasis. My CF center proposes a therapy with cefoxitin (which I do for several month) and now additionally the leprosy drug clofazimin. My question: are there any studies or experience with these drugs? The side effects (discoloration of the skin) are frightening me very much. Furthermore the therapy resembles due to the not enough researched mycobacteria rather a "trial and error". As I want to delay a transplantation due to the high risk of the germ as long as possible, I try to exhaust all therapeutic possibilities. Can you make a recommendation about clofazimin? Many thanks for your answer in advance! Patient female, 33-years-old FEV1 28-40%
06.05.2015
Dental brace/retainer in Cystic Fibrosis
Are braces (that cannot be removed) problematic from a hygienical point of view? Would you prefer a retainer (removable orthodontic appliance)? We as parents would rather prefer braces (that are attached to the teeth and cannot be removed) for our child. Many thanks.
06.05.2015
CF
I am a 15-year-old girl, and have had for 10 years unexplained abdominal complaints and since 4 years I often suffer from anxiety. I have a lot of mucus that I cannot cough up properly. Very occasionally I also lose some blood when I cough too hard. This blood is then mixed with mucus. Afterwards I often have pain in my lungs. Is it possible that I have cystic fibrosis? Or is it not possible?
06.05.2015
Visit water park Neeltjejans
What is your advice in planning a visit with a 6 year old patient with CF to the waterpark Neeltjejans on a blissful summer day? http://www.neeltjejans.nl/waterpark-attracties/
06.05.2015
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