Topics

No effect?
Hello, I suffer from CF and take for one week Bronchitol®. However, I do not have the impression at all, that it transports my mucus. During inhalation I cough severly, however it does not come really anything out, it is more a dry cough. I am now a bit insecure, I cough now more than before (the whole night), however nothing is getting loose.... I hardly cough in general, now I do it constantly and nothing happens, it is only an irritating cough. Does it take some time until it has an effect? I have up to now read so many positive reports from other patients, that I ask myself the question, if it is effective at all in my case!
13.10.2014
Irritating cough
Hello, since a short period of time I have a strong irritating cough, so that I can hardly breathe in between! I inhale Bronchitol® as well as Tobi®! Probably one can help me further! Many thanks in advance, S.
13.10.2014
Acne in case of CF
Dear expert team, are there any other possibilities to treat an acne conglobata of a CF patient? Isotretinoin and antibiotics have unfortunately not brought an improvement of the skin picture. Many thanks in advance and best regards,
13.10.2014
Removal of the gallbladder
Hello, can the need for enzymes (Kreon, Panzytrat etc) increase after removal of the gallbladder? Yours sincerely, A. K.
13.10.2014
Anaesthesia
Dear ladies and gentlemen, I have CF and I am 49 years old and I have given birth to 3 children. Last year I had a severe infection with pertussis, due to the strong cough over 3 weeks during day and night, my pelvic base suffered. After an urodynamic investigation in the university hospital, a descensus of the uterus has been diagnosed and they recommended an operation, a vaginal hysterectomy. Which kind of anaesthesia do you recommend and what has to be taken into account? The operation is going to take about one hour. The FEV1 value is between 48-52%, germs Staph. aureus, Achromobacter and Aspergillus from time to time. No Pseudomonas. Many thanks
13.10.2014
hygiene
What are the current recommendations for the use of the toothbrush (cleaning - life of ....) because it is a question that is regularly asked at the CF Center? Thank you in advance.
06.10.2014
Compassionate use program for deltaF508 patient
Hello In the press release dated on June 24th, 2014, the Vertex company talked about a "compassionate use program” [comment of the translator: a compassionate use program describes the tolerated usage of a drug that is not licensed for humanitarian reasons] for people who really need a new medicine (I get i.v. antibiotics every 2 months and my FEV1 is actually 30% of the predictive value). Do you have some news? When could this program start? How to get in? I’m not expecting a real improvement but a stabilization of my health. Knowing that submission to the FDA [US Food and Drug Administration] (and EMA [European Medicines agency]?) has the status of fast track designation, when can we expect the agreement of these two regulatory instances? Thank for your reply. A CF patient of 32 years.
06.10.2014
Grommets (tympanic tubes) yes or no?
Hello, Our 4-year-old daughter suffers from CF! She has an impairment of hearing caused by mucus behind the ear (probably due to a precedent otitis media)! At first, we were told to wait and have a control after 3 months, if the finding will not improve: grommets…. Now we have 2 opinions, one physician says, no grommets in case of CF because of bacteria and the other physician says, this would totally be nonsense – if necessary grommets have to be put in. What is your opinion about this? Many thanks.
06.10.2014
Diagnosis of CF?
I am 54 years old. I suffer for about 12 years from the following chronic diseases without a detectable reason: pancreatitis, diarrhea, sinusitis and frequent infections like bronchitis, and atypical pneumonias. Even in case of severe cough I cannot cough it up. Two years ago bronchiectases had been diagnosed. In spite of this, the sweat test was negative. Is it neverthe less possible, that it deals with CF? (I do not drink any alcohol and do not smoke).
06.10.2014
Inhaled salmeterol/fluticasone (Seretide®)
Hello, I would know something about the intention to inhale salmeterol/fluticasone (Seretide 50®) each day, even when the child is not secreting. Thanks very much.
29.09.2014
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