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Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
- allergy
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- asthma
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- oxygen supplementation_therapy
- physiotherapy
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Topics
- Airing at night in the wintertime in case of CF
- Hello, I come across again and again differing opinions form physicians, concerning the nightly tilting of the window in the wintertime. One physician says, it is better to keep the windows closed, as outdoors the cold air would be too dry. The other arguments in favour of opening the windows, as the house is heated and even if there is no heating on in the bedroom, the air would be better in any case for CF patients with an open window. Could you give me a clearer answer here? I do already the following: wet towels and water bowls on the radiators, regluar airing and switching off the heating during sleep. Many thanks in advance
- 14.01.2014
- Home i.v. - peripheral venous catheter or butterfly
- Dear ladies and gentlemen, I have just had a home i.v. therapy. As this has been my first i.v. therapy, I have been stayed 2.5 of the 14 days in hospital, the rest of the time at home. The infusion of daily 3 x 2g meropenem was running over the whole time through a peripheral venous catheter. I did not have any side effects due to the meropenem, however, the peripheral venous catheter had to be changed for 6 times altogether, as the catheter was blocked; a reddening or pain occurred or the infusion was running into the tissue. Often the vein was inflammed at discharge of the catheter. I have now heard from my physiotherapist, that some patients get the i.v. therapy with a butterfly instead of a peripheral venous catheter, that is placed anew for each infusion and is afterwards immediately discharged. My question is now: which of both methods can be recommended? With which method the danger of getting a long-term damage to the vein is the smallest? I want furthermore to add, that a friend of mine who is physician would place the butterfly, so that you can assume that the infusion is done professionally. Thank you for your efforts!
- 14.01.2014
- Colloidal silver
- Dear expert team, can colloidal silver be used in case of CF for prophylaxis of flu-like infections? The germ-killing effect has indeed often been investigated. As being a person without CF I have personally made good experiences. Now, my girl-friend (CF Patient) would like to try it also, however she does not dare as she is insecure if there are any interactions with other drugs. Many thanks for your answer.
- 14.01.2014
- State of mind
- My brother was diagnosed with cystic fibrosis. He died in 2007. He waited for a transplant… I realize now that I do not have all mourned. I'm still unhappy, I miss him. I’m full of regret! I realized that I needed a psychologist. I'm 35 and I can not move forward ... neither professionally nor on the sentimental level... I'm freezing. I live on Xxx, should I contact a psychologist specialized in cystic fibrosis, or a "normal" psychologist? Cordially
- 13.01.2014
- Belt during physiotherapy/inhalation
- Does it make sense for my one-year-old daughter with CF to put a belt (or bandagae,...what is the technical term here?) around the thorax during physiotherapy and inhalation? If yes, can this "belt" be prescribed as a therapeutic appliance? Many thanks!
- 13.01.2014
- Ionisator
- Dear expert team, do you have any experience with devices for ionisation of the room air? The improvment of room air quality is for sure advantageous for CF patients? Many thanks
- 09.01.2014
- Salty child = Cystic Fibrosis?
- My daughter, 1 year old, tasts ever since strikingly salty. After heavy sweating, her head sometimes glitters. Are there any other illnesses or "normal people" who show this phenomenon or is that a conclusive hint for CF?
- 09.01.2014
- Therapy of the protein
- Hello, We have learned in September by the "INSERM" (french national institute for health and medical research), about the discovery of 2 molecules acting on deltaF508 CFTR protein. What is the difference between theses 2 molecules and Vertex’s molecules (Ivacaftor® and Lumacaftor®) that are tested in combination for efficacy in a phase 3 trial for patients carrying deltaF508 mutation. Thanks
- 08.01.2014
- POTENTIATOR / GALAPAGOS
- Hello An article published on 12/16/13 indicates that the biotechnology company Galapagos has a new drug candidate (potentiator) which will be tested in clinical trials. How much credit can you give to this notification? Have you more information? Thanks
- 08.01.2014
- Cat and CF Child
- For brevity, my brother (7 years) has cystic fibrosis and my parents refrain to believe that having a cat in the house transmit many diseases that worsen the mutation despite hygiene precautions. I would like a professional opinion on the benefits or risks about a cat for CF patients. (PS: no family member is sick or allergic except my brother). I'm sorry to bother you and I really admire what you do for all these people. May God reward all your efforts. Thank you very much!...
- 08.01.2014
