Topics

Taste / Smell gone
Dear team, for several months, my sense for smell and taste has nearly totally completely gone. I have polypes, however nor very many, I have been operated twice and in so far all sinuses are widened. Antibiotics inhalative and orally, Vitamin B1, cortisone nasal spray, bromelain are not effective. I have to be careful with taking cortisone, that I have already taken several times (inner eye pressure increased, bone density, psychic affections). Nobody is taking the topic really for serious. Can it really be, that nothing can be done anymore? It really impairs my joy of living and is a burden for my relationships and social life, as I always liked eating and cooking. I am indeed a bit depressive, which increases with time. Many thanks for advice, CF patient, adult
25.11.2016
Pseudomonas aeruginosa and sterilization of the nebulizer
We are parents who want to know when to sterilize nebulizers ? Just before the use? Or after using and letting dry on a paper towel without active drying, in a dry and clean box? Is pseudomonas transmitted via the air? When is the best time to sterilize? Before or after using? Thank you for your answers on this point of hygiene.
25.11.2016
yoghurt at home
Hello, Is there a risk to consum home made yoghurts (because there is fermentation for several hours)? Thank you
07.11.2016
Sexuality and libido
Hello I'm a 23-year-old CF woman. For 3,5 years I have a boyfriend and I have great difficulty with sexuality: I am more often tired and I have a "sensitive" cervix (inflammation). I bleed after every sexual relation (this problem has been seen and reviewed several times with a gynaecologist and despite treatment and operation, it's coming back...) Is there anything to do against low libido? A help? Propitious moments? For the day when I'm not with him I think a lot and I really want him, but once in the evening I no longer think and when we go to bed my only wish is to sleep. However once in action I forget my fatigue, but I never wanted before. I feel that this becomes a real problem in our relation and my boyfriend is more and more frustrated. Thank you for your help
07.11.2016
Genetics
Hello, if a complete sequencing of the gene had been done 4 to 5 years ago, however the symptoms persist (mucus, colonization, pancreatic insufficieny, normal sweat test), does it make sense to have a new genetic investigation done after these years? Many thanks!
07.11.2016
Treatment of the sinuses
Dear expert team, I have a question about the treatment of Pseudomonas in the sinuses. Due to an intermittend Pseudomonas infection of the airways, my CF center suspected, that Pseudomonas could also be in the sinuses and should be also treated there, even if the finding of Pseudomonas in the nasal swab and nasal lavage was negative. Now I inhale for the airways colistin and tobramycin one after the other for several months. For the sinuses, colistin has however been prescribed for only 28 days via Pari-Sinus. My CF center is of the opinion, that this duration is sufficient for an eradication of Pseudomonas from the sinuses. What is your opinion? Are there any reports about an eradication of Pseudomonas from the sinuses after only one month of colistin inhalation via Pari-Sinus? Or is a longer sinu-nasal therapy needed, e.g. as long as the duration of the therapy of the lower airways? Many thanks for your answer and your efforts.
07.11.2016
CF in animals
Can animals also suffer from CF or can this disease only occur in humans?
07.11.2016
Drug fever due to i.v. antibiotics
Dear ladies and gentlemen, my daughter (12 years old) got recently an i.v. antibiotic therapy in hospital due to a markedly worsening of her lung function in the last year. In the first week, the therapy seemed to had a good effect. In the course of the second week, however, she got high fever and extreme chills, that occurred in very regluar time intervals and could be suppressed via the intake of ibuprofen. The treating physician suspected a viral infection and wanted to extend the planned antibiotic course for longer than 14 days, in order to prevent a bacterial infection. Via our own research, we got information about the possibility of a reaction to one of the antibiotics with fever and rush (explicitely mentioned for CF patients as a possible side effect in the leaflet). The treating CF physician adhered to the viral in fection, the physician in charge did not know anything about a possible side effect like this, however he saw a high possibility for a connection due to the regluar fever curve and the preparation that was given every 8 hours. The last planned dosage was left out according to our wish and in the course of the next day our daughter was at last free of fever. It was strinking to me, that his possibility was not known on the ward, in spite of the fact that children with CF are frequently treated there and I am very worried, in case my daughter should need such a treatment again. Does such a reaction occur frequently and what shall we do the next time in order not to risk again an allergic reaction? Many thanks
07.11.2016
Sweat test and diagnostic algorithm
Dear expert team, I have read the legal disclaimer and hope my question is possible. I do not want to get a diagnosis of course, however I am looking for further, additional expert opinions. Our son, 6 years old, is at the moment investigated for CF. This was because I had been on rehabilitation due to my own lung disease (LAM, that has nothing to do with CF, other mutation etc.). During rehabilitation I got in contact with CF patients and told the story of my son, who has like me frequently infections of the airways. During the discussion it was speculated if those infections could have something to do with my lung disease and I reported the suspicion of my physicians, that I indeed would also have a so-called slight infection-asthma. In my family there is strong allergic rhinitis (my father and my brother) and my son is also a “cougher”. With that I mean: colds are always starting in the nose, are going down and turn to the bronchi. There the cough is lose however is long-lasting, sometimes for 2-3 weeks. The cough is therefore productive, rarely my son is obstructive and a real bronchitis or even a pneumonia has never occurred. He never got an antibiotic, as it was not necessary. However, my son is sweating easily and is underweight (18,5kg) with a normal height (118cm). He does not eat much, however healthy food, much fruit and salad. He is very sportive and sweats easily, he is however not out of breath. Due tot he talk with my CF friends I contacted the pediatrician, who made an appointment for doing a sweat test in the near children’s hospital. The first chloride value was unfortunately at 50. I have been told, that this could be due to a lack of fluid. My son is not drinking much. The following two days I let him drink quite much (like it was possible) and the second sweat test value was then at 31. Then we had a stool sample investigated. The pancreatic elastase had a super value (I do not have the exact values), fat in the stool was slightly increased. Next step: CF center. Here a genetic testing is done and a third sweat test. I could just wait for the values. However I cannot sleep anymore. After my own diagnosis of a very! seldom lung disease that is life shortening out of total health in February this year, now this nightmare. I often think “if I never started it…” I feel like in a diagnostic mill, a machine that goes on its way. It is good, that one looks so precisely! However it is a borderline value after a borderline value and the genetic test is investigating the most frequent 30 mutations out of 2000. If the test would be negative, which I hope very much, it is going on….according to the diagnostic algorithm. This is bringing me down. My question: how do you judge the situation, is the suspicion really realistic? What else could be the reason for an increased chloride value? What is the genetic testing for that does not test for 1970 other mutations, if it is negative? How long does such a test last? Many thanks in advance and please do excuse that this was quite a long text and that it contains several questions. Best regards, [name of mother was taken away by ECORN-CF]
07.11.2016
New curcuma preparation
Hello, As far as I know, the effect of curcuma on CF is tested in the Netherlands in clinical studies. Now I have read, that a new preparation is going to be put on the market, that should guarantee a high bio-availability of curcuma and therefore should be especially suitable for CF (http://kurkuma24.com/kurkuma-kaufen/kurkuma-mizellen/). Could you please give me a statement on this preparation? Is it worth a try? And if, for which mutation classes it makes sense? With best regards and thank you very much!
12.10.2016
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