Topics

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
Nasal shower after all rather harmful?
Hello, as I have again and again problems with the sinuses it would interest me, if nasal shower in CF is going on to be recommended? My general practitioner said to me that more actual studies have shown a rather negative effect, as via a nasal shower supposedly germs are flushed increasingly into the sinuses. How is the actual recommendation, now? A furhter question: does isotonic sea salt nasal spray dry out indeed the mucosa? My general practitioner dehorted my also of that. Many thanks for you answers.
23.04.2010
Two CF children in same class
Hello, Our son (7 years old, CF) and another girl with CF are in the same class. With regards to social aspects we do find this positive. However, her health condition has now deteriorated (transplantation is planned). Since four weeks she is Pseudomonas positive and a therapy with antibiotics did not succeed. We know about this diagnosis since two days. Which measures (e.g. hygiene) are recommended? Our son hardly has any lung problems. Do we have to expect an infection even though the lung is in a good condition. Many thanks
23.04.2010
Doubts about cystic fibrosis
My son is 5 years old. Since September 2009 he coughs continuously, his stools smell foul. Should I be worried?
21.04.2010
FEV 1
Dear experts, at measuring of the lung function of my 9-year-old daughter (CF) there are mentioned 2 FEV1-values. FEV1, measured in D%(actual1/desired) as 26.8 and FEV1% VC MAX, measured in D%(actual1/desired) as 20.9. Which of the two values corresponds to the "classical" FEV1-value, that means to wich value I can be orientented towards? Thanks and greetings
21.04.2010
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