Topics

Changes of symptomes via antibiotics
Hello, I take for one week ciprofloxacin and cefuroxim due to a worsening of the cough and increased inflammation values. Now it is like this, that the cough has gotten much better, also I have no problems with breathing, however there are still quite viscous secretions present. Furthermore I have sometimes a feeling of tension in the thorax and partly back pain. Also headache sometimes and a slight feeling of dizziness in the head when turning around. I have taken both antibiotics already several times and had always the impression, not to tolerate ciprofloxacin well. Can it be that the drug causes a worsening of the situation? Can I still wait some days or should I better go immediatley in a hospital?
05.08.2016
Result of sputum investigation
Today I got the result of my sputum investigation. For 6 months, I have not taken any antibiotics, either orally nor inhalative or i.v.. In spite of this it is written there, that antibacterial inhibitory substances were present. How can this be?
05.08.2016
Pregnancy and CF
Hello, I have an urgent question. I am 26-years-old and weigh 54kg. I only inhale with hypertonic saline 6% 2-3 times a day and use salbutamol spray 2 times a day. Additionally, I take Kreon. I got pregnant with the permission of my CF physician via in-vitro fertilization. My lung function was around 67% before pregnancy and I am doing quite fine. I used to run on the running belt 4-5 km 4-5 times a week. Now I have the problem, that I was not allowed to run in the first 3 months of pregnancy as I had bleedings during pregnancy, that came however only from the opening of the cervix. Therefore I do not run for the last 6 weeks and therefore I have now more mucus and I am afraid that the lung function is worsening due to this. I have already talked to my physiotherapist about this and she is of the opinion, that this would not be a problem and that I could improve lung function after birth via intensifying therapy. I urgently need advice how I can keep fit in spite of this respectively keep the lung function up. When inhaling hypertonic saline I use the flutter and a cornet, nothing else. I ask for a quick answer, many thanks.
05.08.2016
Symptoms in case of CF carriers
Dear experts, My nephew is suffering from CF. I myself have not been tested, if I am a carrier. Two years ago, I had the accidental finding of an IPMN (intraductal papillary mucinous neoplasia) in the pancreas. These had been removed via a Whipple operation. At the control investigation, now again a widening of the pancreatic duct has been found and another operation is in discussion. Can it be that I am a carrier for CF and therefore cysts are forming in my pancreas, that secrete mucus? Are these cysts the same as IPMNs (concerning the danger, that they turn to be malignant)? Many thanks for the information, B.
05.08.2016
Mutation c.3718-3T>G and deletion of exon 16 to exon 20 heterozygous found
Hello dear experts, my daughter (today 12 weeks old) has been diagnosed to suffer from CF after she had a sweat test at the age of 5 weeks. A molecular genetic investigation had been done. Via this investigation, a heterozygous c.3718-3T>G-mutation in combination with a heterozygous deletion of exon 16 to exon 20 of the CFTR gene has been found. Additionally the rare change c.224G>A,p.ArG75Gln has been found heterozygously. Now my question: What does this mean and can one make a statement on the clinical course of the illness due to this mutations?
29.07.2016
Stenotrophomonas maltophilia
What does the finding of Stenotrophomonas maltophilia mean for me as a CF patient? Is there anything to take into account concerning meetings with other CF patients or events other CF patients take part in?
25.07.2016
Quinsair®
Hello, could I get some information about Quinsair® (inhalation of levofloxacin)? Since when it is on the market, how, where and when is can/should be used? Best regards,
25.07.2016
QR-10
Hello Which mutations are concerned by the QR-10 molecule which targets the correct synthesis of CFTR protein? Thank you for your reply
25.07.2016
CTP-656 POTENTIATOR
Hello Could you tell us which company produces the activator CTP-656 and which patients will potentially benefit from this molecule? Thank you for your reply
25.07.2016
Bronchoscopy
Hello, Could you tell me, in the context of cystic fibrosis, indications that lead to consider endoscopy of the lungs in children? Is there an interest for non-expectorating children? What are the expected benefits? The potential risks? Is it an increased risk of infection with Pseudomonas aeruginosa? Thanks in advance Best regards
16.07.2016
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