Topics

Alcaligenes / Achromobacter xylosoxidans
Dear expert team, Is there any new knowledge / therapeutic strategies concerning this bacterium (last question/answer 18.09.04)? The first identification of this bacterium was on the 15.02.03 and again on the 08.12.03. Almost at the same time Pseudomonas has been identified for the last time (30.01.04). Since then, Alcaligenes could be identified in the sputum during all controls – however not causing any problems (FEV1 = 87,2% / 24 years) – Pseudomonas could not be detected anymore since then. Do you probably see a connection between these two findings – does Alcaligenes probably cause such unfavourable circumstances that Pseudomonas can not / does not like to colonize anymore? Alcaligenes is not treated – all oral antibiotics are not effective according to laboratory findings. In addition, the following bacteria can be identified in the sputum sample: staphylococcus again and again (cefuroxim sensitive) / aspergillus + hämophilus from time to time. Many thanks in advance, Yours sincerely, ….
25.12.2007
PSA (prostate-specific antigen)
Hello, are there any hints/investigations/statistics for increased PSA-levels in male CF patients? CF patient 46 years old PSA-level increased from 3.6 to 7.1 in 21 months, first biopsy 14 stamps negative.
25.12.2007
Pregnancy after lung transplantation
Dear expert team, I have been lung transplanted due to CF 6 years ago. As a am living in a stable relationship, I am feeling again the desire to have a baby by the course of time. I do not have any children yet and I am in a good condition. I did not have any rejections for many years and I had only 3 rejections altogether in the whole time. Furthermore there had not been any complications either. Is it possible for me to give birth to a baby? I would strongly desire that. In case you do not know anything about this, I would appreciate if you could give me an advice to whom I can ask this question. Best regards,
14.12.2007
Several children suffering from CF in the kindergarten
Dear expert team, I got the question from a kindergarten, if there is no risk in having two children suffering from CF (one 3 years old, the other one 5 years old, not related) in the same kindergarten (different groups, but no strict separation). Parents and nursery school teachers are worrying about a possible reciprocal infection with germs. At this time-point, none of the children has an infection with a problematic germ (which can, however, change of course). Can I give the advice with a good conscience that this situation is quite safe or should I advise the parents to give the children to different institutions? Many thanks for your answer,
14.12.2007
CF out-patient department Frankfurt
Does the CF out-patient depatment in Frankfurt/M. (Germany) take also children for treatment? For some time I am thinking of changing the out-patient department... Could you give me some information?
14.12.2007
Pneumococcal vaccine
Dear expert-team, We would like to have our son (4 ½ years old, diagnosis of CF 1 ½ years ago) vaccinated against Streptococcus pneumoniae, what has not been done until now. The paediatrician is of the opinion that it is advisable to use the polysaccharide vaccine and the conjugate vaccine. I thought that the conjugate vaccine is only used in babies and small children and you do not need this kind of vaccine anymore as soon as the polysaccharide vaccine can be used (which covers a border spectrum of S. pneumoniae anyhow). Please give me some information what is advisable to do. Many thanks!
14.12.2007
Uric acid
Dear ladies and gentlemen, I have an increase of the uric acid for sometime. Are there any general recommendations for CF, at what amount of the uric acid this should be treated and which drugs can be used? Is this also a typical finding in CF? I have heard once, that the digestion enzymes (Kreon, Panzytrat etc.) contain a very high amount of purine. Surely you can not allow yourself a low-purine diet in CF, because additionally you also have to pay attention that the weight is not decreasing rapidly… Many thanks in advance.
14.12.2007
Ventilation system
Hello, At the moment we are planning to build a one-family house. In the meantime our daughter, 14 months old, has been diagnosed with CF. Therefore the question arises, what we have to take into account concerning the building of our new house. So far, we only got the advice to install wash-basins without overflow etc. Because of the way houses are built today (the house is totally isolated against the outside), it is recommended to install a ventilation system (not air-conditioning), which exchanges the air automatically. Is there the danger of getting Pseudomonas bacteria into such a system multiplying in there (probably because of condensating water)?
14.12.2007
CF at the age of 58 years and with 100kg
When I was 16 I have been diagnosed with CF after a sweat test in a specialized hospital for lung diseases in Bremen. My brother died of this disease at the age of 38 years. As I have been in an extraordinary good condition until 2 years ago, I did not bother about this disease. At the end of the year 2004 and beginning of the year 2005 the problems occurred. I have been admitted to the hospital because I had only 50% oxygen in my blood. At that time point I had been living in Spain for already 15 years and since then I have been started on a therapy against asthma. I tried to persuade the physicians that I was suffering from CF, however they only laughed at me. They said I was too old and too big for this disease. They gave me cortisone and that was it . Therefore I had to bite the bullet and did a DNA-analysis on my costs. Of course I do hardly understand the result. In addition, I do not have the possibility to contact a CF specialist here in Spain, as there is only one children hospital near Valencia and they don’t take me there. So this is my request to you: what does the following mutations mean: : S549N, S549R, R553X, G551D, V520F, I507del, F508 del, 3876 delA, 1717-1G--A, G542X, R560T, 3120+1G--A, A455E, R117H, 394deITT,2183AA--G, 2148delA, 2789+5G--A, 1898+1G--A, 621+1G--T, 711+1G--T, G85E, R347P, R347H, I148T, W1282X, R334W, 1078delT, 3849+10kbC--T, R1162X, N3656delC, 3905insT und polimorfismo: 5/7/9T. I would be very grateful for your help. I would like very much to quit the cortisone therapy and to prove the normal lung physicians that I am not suffering of asthma. Please help me….Many thanks.
12.12.2007
Smoking with CF
My boyfriend (26) suffers from CF and he smokes a lot and he doesn’t try very hard to live a healthy way of live; probably due to his view of live influenced by the illness. Probably I could give the answer myself, but it is obvious that smoking etc. worsens the situation a lot, or not?
12.12.2007
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