ecorn-cf: App. question list

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Oxygen supply of the lung: My 7-year-old daughter is under medical treatment in Spain since her 3rd month of life. She is suffering from CF and has now a lung volume of 35%. A transplantation is urgently necessary. For 10 month we have liquid oxygen for breathing via nasal tube at home. The physicians have NEVER offered this supply. Only on requesting it was possible without delay etc. It's my strong conviction that this "carelessness" of the physicians is the reason for the extremely bad health status of my daughter. If she had been able to breathe oxygen already for 3 years, her lung volume would be markedly better or am I doing wrong? Can somebody help me concerning legal measures on this? I want to prevent that this doctor will go on causing damage!!!!!!!!!!!!!!!!!!!!; 24.02.2014

Maintenance of portacath: Hello, What are the recommendations for maintaining a portacath in order to keep its effectiveness? Are there any care practices to use between antibiotic cures? Thank you for your answers. Sincerely, a patient with cystic fibrosis.; 20.02.2014

Sport therapy in case of asthma and CF after i.v. cure: Dear ladies and gentlemen, how can I after an i.v. cure work-up again the FEV1, in case it has been decreased by half. I have allergic asthma and CF and exercise on the cross trainer, within 2 months I could raise now up to 2 x 10 minutes with 3 minutes pause in between. Does it make sense to exercise every day or only 3 times a week and do I also have success, if I raise the time and the watts (due to the Asthma) less? Many thanks for your help and best regards, S.; 20.02.2014

S. aureus colonization: Hello, in the last swabs of our son always S. aureus has been found. Symptoms of an infection are usually not present; for two weeks he is coughing without fever, without sputum and without that he is doing generally bad. He is not taking an antibiotic. First question: is it generally o.k. to desist from a general antibiotic therapy or prophylaxis, if there are no symptoms going along with a S. aureus colonization? Second question: If in case of a proven S. aureus colonization there is intermittend for a few weeks cough without sputum and without fever, is it then still o.k. to desist from an antibiotic drug? Third question: in case a waiver of an antibiotic drug is actually o.k., what would be reasons for an antibiotic therapy: fever? Bad general condition? Or in case of persistance of the cough over 2-3 weeks would one initiate an antibiotic therapy, even if otherwise no other symptoms are present? Many thanks for your efforts,; 17.02.2014

Augmentin® dosage: Dear expert team! I would like to know, if there is a general guideline for the dosage of Augmentin® tablets 1 g? I know however, that the antibiotic drugs in case of CF are always given in higher dosages, is there however a general guideline on this? Would you say, that 5 tablets of these 1 g tablets per day in case of a body weight of about 48 kg for the duration of 14 days are not a bit too high? Many thanks in advance Best regards, I.D.; 17.02.2014

Klebsiella in the throat: Klebsiella have been found in my throat swab and doxycyline has been prescribed 100mg, 10 tablets. Can I presume that they will disappear after the treatment?; 17.02.2014

Autohemotherapy: Dear expert team, I am a female CF patient (adult age over 40). Does an autohemotherapy help to minimize infections? I have read that the own blood is regarded as "foreign" by the body after the stay outside the body and so an immunoreaction of the body is initiated respectively its own immune defense ist stimulated. Some patients report however, about good experiences with this therapy. However now I do not know, if it could help in CF patients. Best regards,; 17.02.2014

FEV1: Hello, I am a 46-year-old CF woman and my FEV1 has decreased after a pneumonia, that has been treated for 4 weeks with an i.v. cure because of Pseudomonas, about half of the value from 52% to 28% and I still need oxygen, two months after discharge from the hospital, in spite of the fact the physician tells me, the CT would not look bad. It is not clear to me, how this could happen so fast. What happens to the lung? How can I now work-up the FEV1 again and how do I get away from the oxygen? Many thanks for your efforts, best regards, S.; 17.02.2014

Stagnant water?: Dear expert team, the grandparents of our daughter (2.5 years old, CF) spend their summer holiday every year at the Lake Constance. This year they would like to invite our daughter to go with them there. They both want to calm our worries concernig swimming lake and Pseudmonas danger with the argument the Lake Constance would not be a stagnant water. We would therefore like to ask you about your judgment concerning possible dangers from humid germs in and around the Lake Constance! Many thanks for your help!; 17.02.2014

Few elastase in the stool: Hello, In my son (4 years old), very few elastase could be found in the stool and four sweat tests had already been done (in two different CF-centers), all positive. On the other hand, the genetic testing was negative. Can it be that he has "only" problems with the pancreas? The physicians do different test to him for two years, however a diagnosis could not be made, yet. Many thanks for your answer; 17.02.2014