Topics

Stopping birth control
My friend, now 35 years old, is born with CF. It is said that people with CF are infertile, now my question is: Can I stop taking birth control pills? We do not want to have children ...
28.06.2015
nutrition
I am a maternity nurse and wants to know if a mother with a CF baby can do breastfeeding.
28.06.2015
Blood pressure
Hello dear expert team! I am taking the drung Candesartan plus for 10 years now. 2014 I have lost my conscious for 2 times, many investigations did really not bring results. Only a suspicon for a vasovagal syncope. My blood pressure is now without a drug too high in the day mean, unfortunately even not a lowering in the night, either. Unfortunately I have the impression, that my blood pressure medication has side effects. Feeling rapid heart beat. I feel it often to beat hard and I am dizzy, inner disquite. Therefore I tried it for 4 weeks without medication. However 157/97 in the day mean and 144/87 in the night is too high. Longterm blood pressure in the hospital. Which kind of substances are the best for CF patients and which are not suitable at all? I am 48 years old and weigh 77 kg, high blood pressure is in my family. My FEV1 is around 30%. After my syncope I have already changed a lot. I drink much more and try to take less tablets like Arcoxia, azithromycin, ibuprofen, no permanent antibiotic therapy against Staphylococci, my blood values have improved much. Before, creatinin 100 to 135, now 82! Actually I am only taking ACC 600, Vitamin D3 and acetylsalicyclic acid. Unfortunately, the cardiologists do not see the whole human being, but rather only their special area. Just in case of CF, the situation is rather complex. I have heard about some CF patients, that they tolerate the calcium antagonists quite well, however beta-blocker are narrowing the lung. Which experience do you have as a CF doctor for many years? My ultrasound of the heart is normal. Many thanks for an answer.
28.06.2015
First infection with Pseudomonas aeruginosa
Hello, my daughter, 6-years old, is doing quite well, and has a permanent antibiotic therapy for 4 years with cefuroxim, now Pseudomonas has been found for the first time in the throat swab. We have then inhaled with Tobi for 4 weeks, unfortunately it has again been found at the control two weeks after cessation of the inhalation, now even in moderate number, before the number was rather small. Now we are starting again with Tobi and an oral therapy with ciprofloxacin. Should one give the oral therapy a chance or better do an i.v. therapy with tobramycin??? Is that more secure than an oral therapy? I just want that it disappears fast again. Would like to do a home i.v. therapy. Best regards, V.M.
28.06.2015
Off-label use of Kalydeco
Dear physicians, I am a mother with a 3.5-year-old son suffering from CF, living in Germany. My son has been diagnosed at the age of 2.5 years. Overall, his health condition is good. However, the illness affects markedly the gastro-intestinal tract. He has had a long-lasting colonization with germs and has even been underweight after this for a short time. He has the very rare mutation G1244E and the more common one R553X. For the Mutation G1244E there is in my opinion the possibility, to treat him with Kalydeco. Until now, the drug is only licensed for children over the age of 6 in Germany, however on the 18th March 2015, the drug has been licensed for children under 6 years of age in the USA. We as worried parents would like to treat him with the drug off-label, however our Center is denying the prescription off-label with the rationale, that there was no data about the dosage. They do not want to take resposibility for this. I am very despaired and want to do everything that my son can take the drug. I do not understand, why the physicians are refusing so vehemently to prescribe the drug, if even on the homepage of Kalydeco the dosage is written (50 or 75 g granulate). Until now, we did not contact the health insurance however we talked about it in detail with Vertex and with a pharmacy in our home town. Both told us, that the health insurance could cover the costs for the drug, if a CF physician would prescribe it. We know another case of a child in Germany, in this case the father requested the off-label use for the drug and the health insurance agreed. The father posted a contribution on Ecorn. I was not successful in getting in contact with the parents of this child. Could you help us further? I would be very thankful for an answer.
28.06.2015
Kalydeco off label
Hello, my daughter has the mutations delF508 and D1152H. How great is the chance to get Kalydeco off-label? There are obviously in-vitro studies that show, that the CFTR channel is functioning nearly completely in case of intake? There is already a study from Denver about this? In the USA human beings with these mutations profit already from Kalydeco. Many thanks for your efforts.
18.06.2015
Forest manager
Can my son make a training to become a forest manager without worries or is there a big danger to get a germ or fungus?
18.06.2015
Germs in the pool
Hello, I would like to put a pool in the yard for our child with CF. What should I pay attention to in order to limit the risk of colonization with Pseudomonas or other germs? Should the pool have a certain size? Does chlorine kill these germs? If yes, which concentration is needed? It is obviously not possible to fill a bigger pool with fresh water each day! Thank you for answering.
18.06.2015
Port explantation
Dear experts, After 16 years my port was explanted for I did not need it for IV’s since 5 years any more. I decided to do this because I have optical problems and could not rinse it myself anymore as I had done it all the years before. This would have to be done in the hospital from time to time. Unfortunately, the explantation did not work well. The port tube tore off. Obviously it was so much adhered that it was not possible to remove the rest of the tube (~15 cm). Have you heard about such a case before? Which complications are involved? In retrospect, I ask myself if the port could have stayed unrinsed in the body? This would have saved me at least the infection risk of the operation. Best regards, M. N.
16.06.2015
Sweat test
Dear expert team, Our 4-year-old daughter has recurring obstructive bronchitis since three years. We were in the children’s hospital twice for having a sweat test done. The values were on the borderline (41 and 51 Na). The test that was done in the outpatient department was negative (16 Chloride). Can Cystic Fibrosis be excluded for sure? How can such differences of sweat test results be explained? Elastase detection was negative while she had never any problems with bowel movement! Many thanks for giving your opinion!
16.06.2015
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