Topics

Pneumonias
Dear expert, I suffer from severe asthma which has proven to be almost completely resistant to therapy. The only thing that brings relief are high oral dosages of cortisone. Lung function is permanently limited. I have about three pneumonias per year in addition to several other infections. One could almost speak of a “long-term antibiotics therapy.” There has been repeated evidence of Pseudomonas in my sputum. I have often been given Ciprofloxacin during the infections, but also i.v. antibiotics. The lung specialists in the lung clinic think that this is most likely a chronic colonization. Does this mean that one keeps the bacteria in the lung forever? And are they responsible for the infections? Last week I did a sweat test and came out at 50. This means it is inconclusive, right? Could the test be wrong? I am 20 years old and CF is usually not diagnosed at that age after all, is it? Can one have severe asthma (I often end up in the hospital due to attacks) and CF? Is there a big difference at all in my case? My asthma is progressing and lung function deteriorates from each series of infections to the next. I regularly inhale salbutamol via Pariboy®, since I have severe shortness of breath and can get rid of the sputum more easily this way. I am particularly tight in the mornings. Therefore, my everyday life is characterized by inhalation and breathing therapy anyway. I was suggested to inhale antibiotics permanently and to see whether the frequency of infections, particularly of pneumonias, would decline with that. Which of the two is more harmful – oral antibiotics every four to six weeks or long-term anbitiotics inhalation? The doctors think the progression of my asthma is unusually severe. Over the past four years, my lung function has deteriorated rapidly due to the pneumonias. Kind regards.
23.06.2010
Wind instrument
Our 5 year old child would like to learn a wind instrument. Is it good or bad for a CF patient to play a wind instrument with regards to the pressure on the lungs, etc.? And would it be better to use a plastic flute instead of a wooden flute since wood does not dry that quickly with regard to the danger of Pseudomonas? Thank you for your answer!
23.06.2010
Current research of gene therapy
Hello, I would like to know how the current state of research of gene therapy in the field of cystic fibrosis is? What are the prognoses for the future, especially for newly diagnosed babies? And if other countries are “more advanced” in comparison to Germany? Many thanks for your answer.
23.06.2010
CF in Asian countries
My child has lung problems that seem like CF. After screening for 34 mutations he seems to have one common CF mutation. Specific tests to look for other mutations and a nasal potential measurement are ongoing. Her father comes from Indonesia and I wonder whether Asian people carry other mutations than Dutch people? And are there types of CF that are more prevalent in Indonesia compared to here?
16.06.2010
Lung function baby
Dear expert team, our little daughter is 4 months old and was diagnosed with CF. She is doing well and we are already going to a specialised outpatient clinic. My question is: How is it possible to test the condition of the lung in such a young age in addition to a throat swab? And is it possible to find out if there are bacteria in the lung? Does the throat swab also give information about the colonisation of the bronchia and the lung? Many thanks for your answer.
16.06.2010
port a cath
Dear Expert At the CF Conference in Brest, I learned that Placing a Port a Cath in the upper arm is quite commonly used in England. Some of our female patients have showed interest in this opportunity. We would like to implement this in our practice, but we need some litterature of this subject. Is it possible for you to provide us with the nessecary litterature ? Best Regards Karin
28.05.2010
Ground water and Pseudomonas
Hello, could you tell me whether I have to worry about Pseudomonas in the ground water which is conveyed with a house pump? My daughter is nearly 2 years old and I question whether it is safe to water the flowers, wash the car or fill the swimming pool, since there are aerosols which might reach my daughter. It is reasonabel to argue that letting the water run for some time which cleans the reserovir of the pum or the water tubings would results in no Pseudomonas bacteria. the water is also cool. At which temperature Pseudomonas thrives best? Thanks for the answer. Greetings V.M.
26.04.2010
Interval for taking of medicines
Dear CF team, I (30, CF) am going to take Staphylex® (Flucloxacillin) as a permanent therapy (3x1gram) due to staphylococcus findings. Does it make a difference with regards to the efficiency or formation of resistances if I take it evenly or unevenly throughout the day? Or more exactly: Do I have to take the medication strictly in intervals of 8 hours regarding efficiency or formation of resistances? Or can the interval differ, i.e. once you take it at 8 a.m. and some other time (during week-ends) you take it at 11 a.m. That means: Once there is an interval of 6 hours and some other time the interval is 10 hours. Greetings and thank you.
23.04.2010
Cervix
Dear expert team, My daughter (19 years) who has CF was diagnosed by the gynecologist with a „polypoid alteration” at the cervix. Subsequently, my daughter was sent to the hospital for tissue collection in order to exclude a malignant alteration (the gynecologist was not able to classify the alteration). In the hospital they only diagnosed “mucus” and it was recommended to have it removed by lasing; they said this was done frequently. I read in your forum that cervical mucus in CF patients occurs frequently and therefore I wanted to ask if it makes sense and is recommended to have it removed by lasing or if the mucus forms again after a short while. Thanks for you answer.
23.04.2010
FEV1
Dear expert team, My question is: I am 30 years old and have an FEV1 of currently 81% which is stable for about 10 years now. How is the prospect for me or in other words: is it possible to predict if the FEV1 has to deteriorate inevitably? Many thanks.
23.04.2010
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