Topics

Life expectancy
I've read in an article that life expectancy of CF patients is 39 years ; but is it possible to hope a much longer life ?
21.03.2011
Staphylococcus aureus and Haemophilus influenza
Dear expert team, in the throat swab of our daughter (actually 1.5 years old, diagnosed with CF at the age of 3.5 months) the above mentioned germs have been found (Staph. already for the third time / Haemophilus for the second time, there were months, where she was free of germs). Our actual CF physician does not want to start an antibiotic therapy in spite of the above mentioned result, as she is doing well. That means oxygen saturation 100%, auscultation of the lung good, weight and height o.k., apetite very well, stool o.k., no hearable and visible mucus congestion, no cough. Our physiotherapist does not feel any suspicious mucus. We inhale always 2 times daily with NaCl plus 3 drops salbutamol and 5 puffs of ipratropium bromide. Our former CF physician had prescribed quickly antibiotics for 3 weeks in case of the above mentioned germs. My husband and I, we decided for a demand oriented antibiotic therapy. But is there demand then at the moment??? Due to the different kind of actions of the physicians we are insecure. Should one give an antibiotic only then, if there are symptoms of infection, as e.g. mucus=hotbed, or better in general, means in case of finding of the germs? In case we would not have made a control throat swab, it would not have been visible that our daughter is colonized with germs at the moment, as she does not show any suspicious symptoms. Many thanks for your help.
21.03.2011
Frequent cystitis
Dear team, I would like to know, if the salty skin of my partner (CF) could be a reason for the frequent occurence of cystitis. We are only together for 2.5 months, in this time I already had two times cystitis and one fungus in the vagina. As he is prohibited, we have sexual intercourse without condom. Is it possible that the salt content of his skin of the penis irritates my intimal flora too much? Or can this totally be excluded? My gynecologist was not able to give me conclusive answers to this. Many thanks for your help.
21.03.2011
Tivads - Port á cath.
Dear expertpanel The surgeons at our hospital are used in placing port á caths. on the abdomen. They suggested that specific location for our female CF patients who worries abouthaving a port on the chest or in the upper arm. Placing a port á cath on the abdomen seems ideal because it is allmost invisible, but for a CF patient who also uses the muscles from the abdomen to chough, there might be a problem. So do you have any experience in placing port á cath.s on the abdomen on CF patients ? Best regards Karin Jakobsen
08.03.2011
additional question
My oldest son goes to playschool and plays with another child with CF. If this child has pseudomonas, can this bacteria be transferred to my daughter with CF through my healthy son? Is it contraindicated that a child with CF goes to day-care/playschool? Is it contraindicated that a healthy brother of a child with CF goes to day-care/playschool with the danger of transferring bugs to his sister with CF?
28.02.2011
water cure (spa)
Hello, I have CF, with late diagnosis, and ENT symptoms (chronic sinusitis and polyps operated thrice) and bronchial symptoms. Are water cures indicated and benefical for CF. Thanks for your reply
22.02.2011
cystic fibrosis and menopause
Hello, I was diagnosed at 50 years old with the G551D and Q1476X mutations. I had an early menopause at age 26. Is-it related to cystic fibrosis? Thank you for your reply.
22.02.2011
Aquarium
Dear expert team, our son wants absolutely an aquarium, which I do refuse vehemently because of the risk of germs. As he sticks to his guns and my wife starts to fall into despair, I would like to ask you for help. How do you judge the risk for a CF patient? Many thanks
22.02.2011
Genetic testing
Dear ladies and gentlemen, for our daughter, there had been the suspicion of CF, after the third test it could be excluded. We are planning a child at the moment, can we get tested in advance that we can exclude, better say if our chances for a healthy baby are good? Many thanks
22.02.2011
swimming pool
Hello, My 11-year-old daughter has cystic fibrosis. Our CF centre does not recommend going to swimming pools. Now, on the website of Vaincre la Mucovisicidose in France, it seems that swimming is encouraged for children. Can she go for example to a hotel swimming pool ? Until now she always bathed in the sea or in the lakes. What are the risks in swimming pool?
22.02.2011
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