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- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
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Topics
- Social contacts
- What is the impact of CF on social contacts (social functioning)?
- 14.10.2009
- Bronchoscopy
- Hello, My daughter is 19 years old and for 5 years she has one infect exacerbation after the other. Currently, we have like 4-6 IV therapies per year. During the last treatment stay in Tannheim [place in Germany] a patient told my daughter about bronchoscopy. During the bronchoscopy of this girl, a lavage of the lung was made and the antibiotics reached the concerned areas directly which caused an improvement in her case. Now, I found an information in the internet where a patient also writes about bronchoscopy on a regular basis. However, the medical doctor of our ambulance did not give us the information we needed. Does bronchoscopy make sense? When should it be made and what are the risks and what else has to be considered? Please help us because it cannot go on like this. Best regards, U.
- 14.10.2009
- Test for CF at birth
- Do all clinics in Belgium test for CF at birth ? Greetings and thank you
- 13.10.2009
- Genmutationcombi F508/R117H symptom free
- My husband (age 46) has a very mild disease of CF (F508/IVS-5t) so that most of his life he has been without any symptoms. He only has absence of the vas deferens. Now they have found out that I carry the R117H mutation. Since we would like to have children we want to know about possible risks. When surfing the net I found out that the worst possible combination (F508/R117H) does not necessarily lead to a sick child but that just as my husband such a person could go through life without any symptoms. The explanation would be that R117H is not always associated with symptoms. Is this correct ?
- 13.10.2009
- fibrosis
- My parents told me that they put my bed more upright because I had a lot of secretions. Years later, after a lot of worries with my health it was concluded that I had fibrosis in my throat and quite a severe form. This became apparent after removal of a nerve when my molars were being extracted during general anaesthesia. I’m now four years past that last surgery and have a lot of difficulty eating and I sometimes feel short of breath and I’m very much affected by certain weather conditions. In my case, do you then speak of CF or what should I think because there is very little quidance in this field. Joanna
- 13.10.2009
- Mexican flu
- Dear, I’m a 25-year old patient with CF and I’m worried about the Mexican flu. Can I protect myself from it ? Should I take antiviral drugs before I leave on holidays, are there countries that I shouldn’t go to ? What should I do if I start feeling ill? Thanks for your answer.
- 13.10.2009
- Breakfast
- Dear expert team I have question regarding a healthy breakfast for person with CF. My son is used to have nut wedges for breakfast – we cannot bait him with bread, cereals, fruit or anything else. Well, nut wedges are high calorific food for sure – but is sugar in such an amount okay? He does not have diabetes. Thanks for your answer.
- 13.10.2009
- Cystic Fibrosis and kidney
- Dear expert team, Is there a relation between renal function and Cystic Fibrosis? I have heard that CF can be cured by doing special cleaning and lavage of the kidneys. I myself do not believe in this, however I would like to hear your advice. Thank you in advance.
- 13.10.2009
- Pharmacokinetics of Tobramycin and Ceftazidime
- I am a medicines information pharmacist at Alder Hey in Liverpool and I have been asked to look into the evidence behind the use of twice daily IV tobramycin and ceftazidime, which one of our shared care centres uses. I can see in the CF trust antibiotic guidelines it states that the total daily dose of ceftazidime can be given in two divided doses but it does not mention this for tobramycin. I was wondering if you have any information on the evidence behind giving these drugs twice daily instead of three times a day or once daily for tobramycin and is there any data on the pharmacokinetics of these drugs in CF patients?
- 11.08.2009
- Re: PeP - therapy or flutter?
- Dear Mrs. Koenecke Many thanks for your quick answer. Unfortunately the physiotherapists of my daughter are not agreed. In the center for CF in Verona, where my daughter is cared for, they say we should use the PeP-mask. We do this, but it does not seem too efficient to me. My daughter has actually never secretions, since she has started an antibiotic permanent therapy (every 2 days Azithromycin) and since we inhale 2 times a day cortinsone and salbutamol. Before, we did not have to inhale, neither to take antibiotics. Only since the springtime this is necessary, as she had often infections. We are now insecured, as our physiotherapist in South Tyrol regards the flutter method as more efficient. Also the percussion has been taught to us in Verona, but she does not like it at all and our therapist here says, this is not efficient at all. So now we have 3 forms to choose: flutter, PeP and percussion. What is the pursed lips breathing? I thank you very much for your efforts. I just want to make myself a more detaild picture....
- 11.08.2009
