Topics

Edible mushrooms
Is it correct that people with CF should not go collecting mushrooms and not even eat them?
08.01.2009
Hygiene guidelines for using a port
Dear experts, I am asking on behalf of a patient: My question: Are there any general hygiene guidelines for using a port? I got my port two-and-a-half years ago. When I taught how to carry out my i.v. therapies at home 18 years ago, cleanliness was of utmost importance – closing the windows, washing hands, disinfecting, etc. When rinsing my port (I have had it for two-and-a-half years now) I have to fight for all that: sterile gloves, swab, I only get band-aids when I ask for them. I have never seen surgical masks, injections being drawn up sterilely, or even sterile drapes at my clinic. On the other hand, I witnessed an infusion being drawn up on the ward and, with the infusion set attached, being carried across the hospital to the CF clinic – unprotected. Or the nurse would disinfect her hands carelessly, then run them through her hair and afterwards change the infusion. It isn’t any better on the ward. This uncertainty leads me to not have my port opened in the clinic anymore, let alone have the nursing staff on the ward administer infusions to me. Since my port is located in my upper arm, however, opening it myself is quite difficult. There are hospitals, though, that abide by specific hygiene rules even when they have got their hands full. Your answer explaining how much hygiene is required when using a port is meant to ease my uncertainty, and I could also argue with the hospital staff and doctors differently than just with my anxiety. Many thanks!
08.01.2009
Liquid Oxygen
Dear Expert Team, first of all, kudos to your efforts in answering the numerous questions. I am a little puzzled, since I just read an article on oxygen administration in which TO Hirche said (in answering the question of a 41-year-old patient) that additional oxygen administration leads to an “increased inflammatory reaction in the lung.” What does that mean? I am very concerned now, since I also take additional oxygen at night. Thank you very much in advance. Kind regards.
08.01.2009
Turmeric
Does taking turmeric help, and how much of it does one have to take?
08.01.2009
Another question
Thank you for your quick answer. We received a call today. Our daughter has a protein and fat intake disorder and we have to take another sweat test tomorrow. She is taking pancreatin now. Our pediatrician thinks it could be a sub-group. Does something like that exist?
08.01.2009
Management in case of the finding of atypical mycobacteria (nontuberculous mycobacteria (NTM))
Is there any official guideline about the management of the recurrent finding of nontuberculous mycobycteria (NTM) in the sputum of patients suffering from CF? Getting more specific: a) When is there an indication for treatment (only in case of poor clinical condition or in case of worsening or also in case of good clinical condition)? b) Should one follow an antibiogram during treatment? c) Which antibiotics should be used to treat the single specific subgroups of the NTM (M. abscessus etc.) and how long should they be treated? d)Is there any scientific data available that show that an infection with NTM really leads to worsening of the clinical situation?
06.01.2009
Inhalation of Gentamicin in patients with stop mutation
Many thanks for answering my question. However I expressed myself probably unclearly: I had read that gentamicin, appart from its antibacterial effect, has a potency to treat CF patients with stop mutations, like the one of my son (deltaF508/R553X). So my question is, whether it could make sense for my son to inhale Gentamicin, despite the fact that Pseudomonas cultured from his sputum was tested resistant against this substance. With thanks and friendly greetings, Barbara Schoening
06.01.2009
Latest state of in-patient hygienic measures
I am working as a pediatric nurse on a station where patients with CF are treated. Since we also have patients from time to time with colonization of problem germs (MRSA, B. cepacia, Pseudomonas) I am interested in the expert's advice regarding hygienic measures on the station in order to compare them with ours. Furthermore, I would be interested in the risk of transmitting the germ caused by non-compliance of the hygienic measures. Many thanks!
06.01.2009
Confirmation the diagnosis of CF
Sweat test results are 177;24;14. Fecal elastase 175. Results of mutation analysis is not clear jet. Do these findings confirms possibility of this disease?
06.01.2009
I-neb
Which drugs can one inhale with the I-neb by Respironics at this point? I would particularly be interested in whether there are any desoxyribonucleasis (Dornase alfa) and fenoterol/ipratropium bromide chips. Greetings, S. Ekindy.
05.01.2009
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