ecorn-cf: App. question list

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Cold weather: My 4 year old with cf is being sent out at lunch and break times in this cold weather when I have asked teachers not to is this right; 31.01.2013

Portacath: Hello, my daughter should get a portacath due to her poor veins. Are there any alternatives to the location near the calvicle as she does not want to have the portacath at the viewing area of the cleavage. And are the possible alternatives as secure resp. not more painful? Many thanks, M.; 29.01.2013

Antibiotics only because of common cold?: Dear expert team, Our daughter (19 months; diagnosed since about 7 months) never had an infection and according to the physiotherapist and the CF center her lungs are absolutely free. Thanks to Kreon® (Pancreatin) her weight is okay as well. Since two days she has a common cold and I am not sure if we have to go to the CF center or to the pediatrician for this reason. She has no cough. We are still pretty insecure, we do not want to be worried in an exaggerated way but not be careless either. We are looking for a good middle course. Many thanks.; 29.01.2013

CF and H1N1 infection: Hello I have CF since I was born and I am nearly 27 years old. I was infected by the H1N1 virus at the end of 2009 and since then I experience more difficulties to expectorate. Do you think that there is a relationship between the decline of my lung situation and the H1N1 infection ? Thank you; 24.01.2013

Risk of transmission (germs) from severly ill grandmother: Dear expert team, currently I am very confused asking myself how I can manage the contact between my child (CF, 4 years, Pseudomonas negative, from time to time colonized with Staph. aureus and Haemophilus influenza) and the grandmother. My mother has end-stage carcinosis. Until a short time ago she went to the hospital (in-patient and out-patient) several times. Currently an external bridge nurse is taking care of her at home. Is it possible that she is a "transmitter"? Is there a certain risk of transmission for my son from his grandmother? Especially what MRSA is concerned? Can we do anything against it? Many thanks for answering.; 24.01.2013

information: My girlfriend has CF. She doesn't do her treaments. What is her risk?; 24.01.2013

Increased liver enzmyes: Dear expert team, at a control of a blood sample, increased liver enzymes have been detected. SGOT/AST in the serum was increased by a factor of 2 of the laboratory reference range, SGPT/ALT in the serum was increased by a factor of 3 of the laboratory reference range, ALP in the serum was increased by a factor of 2 of the laboratory reference range, GGT in the serum was increased by a factor of 4 of the laboratory reference range. Ultrasound investigation of the upper abdominal region was without pathological finding in April 2012, except for a suspicion of steatosis grade I. After 3 weeks the values were controlled. ALT/AST and GGT are decreasing but still elevated. The ALP slightly further increased. I am CF patient, I take azithromycin for 2 days as a long-term therapy and had now in november additionally a therapy with moxifloxacin for 14 days. Due to an increased blood chloesterol level I am taking 10mg ezetimib in the mornings and 80mg fluvastatin in the evenings. Could it also be possible that the increased liver enzymes have a correlation with this? Thank you very much for your work and that you run this website. S.; 24.01.2013

Hygiene measures: In how far should hygiene measures differentiate concerning the private setting, day seminars of the association, longer recreational stays of the association, climate stays of the association and convalescent care, visits at the CF-center and hospital stays taking into account the very different risk situtaions and different state of study data?; 24.01.2013

Bicarbonate preparation for inhalation: Dear expert team, Is there a ready-to-use preparation for inhalation with bicarbonate on the market? [The question was originally asked on the German platform of the expert advice] I would like to inhale it with a jet nebuliser. If there is no such preparation on the market can I just add a little bit of sodium bicarbonate from the drugstore to a 0,9% NaCl ampulla? And if yes, how much do I have to add? My intention is to increase the Ph value in the airways. Many thanks for your answers! N.; 24.01.2013

CF & heterozygous?: Dear reader, After reading your articles on CF (thank you for that) I still have one question. I was diagnosed with F508del and R117H, heterozygous, polymorphism IVS8-Tn: 7T/9T. I am confused about the part “homozygous and heterozygous” and in what grade it can cause illness. I understand that heterozygous means in my case that 1 gene is found with 2 mutations. According to the articles I have been reading, it means that I have no risk on illness. However, I have no vas deferens and moreover my sweat is very salty. In other words: that seems to me real disease. I started with my partner an IVF treatment but I have doubts. My partner has been tested and was considered “clean”. We do not want to have children with a serious disease. So my question is: knowing this background, is there a chance that our children will have a severe kind of this disease, and if yes, how big is that chance?; 24.01.2013