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Topics
- Cayston®
- Dear expert team, I inhale for more than one year Cayston® (Aztreonam), as the company indicated 28 days of inhalation, then 28 days pause. My physician in the CF center told me now to inhale Cayston® without pause. Are there any studies, yet, if this could probably lead to an overdosage? Yours sincerely, C.B.
- 17.12.2013
- Do edemas burden the liver additionally in case of CF?
- Dear ladies and gentlemen, many thanks in advance for your human commitment and your expert advice! I have probably an exceptional however a very uncomfortable and important question: Do regluar self-caused edemas, especially in my case at the penis shaft, burden the liver (in case of existing liver problems)? Background: I have CF and liver involvement (beginning liver cirrhosis, however with still completely normal blood and liver values) and concerning sex, I depend on so-called penis pumps due to an erectile dysfunction. By this, often an edema of the whole penis is developing, that subsides slowly after 12 hours. This does not cause any pain, nor does disturb me. I have however fear, that the removal of the water storage respectively the 30 minutes blood stasis in the penis shaft stresses the liver and by this probably burdens it? Or is the liver not involved at all in this and I am worrying totally for nothing? I do not know and have great shame to adress my CF center, that does know me from childhood on and ask about this. I thank you in advance for your answer!!! Best regards, R.
- 17.12.2013
- Problems with teeth
- My daughter, 2 years old, has extreme problems with her upper teeth. They are very thin, begin to break out. Can this also be related to the disease? Where can I get guidelines for dentists without experience in CF from? We have great fear to visit a doctor, as she already has extreme fear rather a phobia of all doctors. She cries and cries and cries. Many thanks and best regards,
- 17.12.2013
- Hyperchogenic bowel
- I am 39 years old and mother of a 20 month old boy by IVF. The test for CF was negative. Today I am 23 weeks pregnant and after the second level ultrasound a hyperechogenic bowel was found. My doctor recommended amniocentesis. Is the hyperechogenic bowel on its own an indication for Down syndrome? Do you believe I should have the amniocentesis?
- 17.12.2013
- Modifier genes
- Hello, could you tell me what are the cystic fibrosis modifier genes? Do we know how to identify them if necessary? If yes, could you give me some examples of modifier genes? Thank you
- 16.12.2013
- Delical® (food supplements for enrichment in calories and/or proteins)
- Hello I' ashamed to ask this question but I really thought I had another box. Actually, no: I will be not able to give him today [his food supplements] because it's sunday. Is it serious??? Expected response. I feel bad for my neglect, but I was so sure! cordially
- 16.12.2013
- bottle of mineral water
- hello I want to know how long can a bottle of mineral water be kept without risk? Thank you
- 16.12.2013
- Role of CFTR protein
- Hello, Can you explain in great details the mechanisms of antimicrobial immune defense in CF and the role of CFTR in these mechanisms. Thank you for your answers
- 11.12.2013
- Bronchitol® and NaCl 5.85%
- Dear expert team, I (26, CF, FEV1 about 65%) inhale for years a lot with NaCl 5.85% (20 minutes in the morning, 30 minutes in the afternoon and 30 minutes in the evening) as I can cough up my suptum very well with this and I breathe easier after this. For a few months, I inhale after that in the morning and evening additionally 10 capsules Bronchitol® (Mannitol) each time, by what I can then also cough up again. My physiotherapist draw my attention to the point that Bronchitol® would make the inhalation with NaCl needless, as the Bronchitol® alone would losen as much sputum as the combination with NaCl 5.85%. What is your opinion about this? I do not dare to try it, as I have worries, that I would do worse without NaCl. Many thanks for your help in advance. Many greetings, L.
- 11.12.2013
- Spouse or donor sperm
- My boyfriend has cystic fibrosis. We want to have children. We proceeded to a semen analysis for him and for me a genetic test. For me, I do not have the CF gene. For him, we will have to appeal to an artificial insemination or IVF. But we would like to know if it has to be obligatory with a sperm donor or can be with the husband's sperm?
- 11.12.2013
