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- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
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Topics
- Intake of Trikafta (Kaftrio/Kalydeco)
- Dear experts, I have heard, that some patients change the intake of Trikafta (Kaftrio [Elexacaftro/Tezacaftor/Ivacaftor]/ Kalydeco [Ivacaftor]). Instead of taking 2 pills of Kaftrio in the mornings and 1 pill of Kalydeco in the evenings, they take 1 pill of Kalydeco in the mornings and 2 pills of Kaftrio in the evenings. Are there any concerns about this? I have the impression that I cannot sleep after having taken Kalydeco (Ivacaftor). Therefore I think of changing the intake or leaving out the evening intake of Kalydeco at all. Many thanks for your answer
- 15.02.2021
- Seed ladder (vas deferens) interrupted in a baby
- Hello, my son (18 months) has been operated due to a retained testicle and during the procedure, the physicians found that the seed ladder was interrupted for a length of 3 cm. They did not give any further information, only that it could be related to the retained testicle. I found in the internet that it could be a mild form of Cystic fibrosis. That frightened me a lot. Unfortunately we do not know, what about the other side, where the testicle is not retained. My question: can it be that the other seed ladder is normal? And could a mild form of CF be detected by the newborn CF-screening? And in case it would really be a mild form of CF: did my son inherit it from both of us? And would that mean that further children coud inherit CF from us? Or could be then only inherit a mild form of CF? Best regards,
- 15.02.2021
- Candida glabrata
- Dear ladies and gentlemen, Candida glabrata has been found for the first time in my airway secretions (CF, 48 years old, female, FEV1 54%, MRGN3/4). I found a study from the university of Tuebingen, Germany from 2016 that drew the conclusion that a chronic or intermittend colonization can lead to a significant loss of lung function. As the fungus is hardly sensitive to Itraconazol, I am a bit worried. Is there any clinical experience on this topic? What kind of symptoms does it cause? How can it be differentiated from a bacterial infection? What kind of treatment is possible? Many thanks for your answer,
- 11.05.2020
- Trikafta and transplantation
- Hello, my son is 20 years old, and is a CF patient with one deltaF508 mutations. Due to his extremly worsened lung function, his CF center recommended to take Trikafta. He got a liver transplant in 2017; this is the reason why he should discuss the take with his CF center. The center, however has no experience with transplanted patients and Trikafta. Do you have any information?
- 11.05.2020
- Travelling
- Is sleeping in a tent allowed for CF patients?
- 24.10.2019
- Rare mutation
- Dear expert team, my son is 20 years old and suffers from CF with a combination of delF508 and 525 delT.-Mutation. I am interested to which group of mutations the second mutation belongs (exon 4-frameshift) and if my son was a candidate for the new triple combination of VX-445. Best regards,
- 24.10.2019
- Cbd oil (Cannabidiol)
- Have studies been done regarding lung function / CF and CBD oil? Why and why not / what are the possible results?
- 24.10.2019
- Cf and echodens intestines
- How many percent of the still unborn babies with CF will show echodense intestines during the 20-week ultrasound?
- 24.10.2019
- Mutation
- Dear expert team, our daughter has the mutation detal F508 and c.1730A>T. Is there any information about this combination? Thank you
- 24.10.2019
- Inhalative antibiotics during pregnancy
- Hello, I am 30 years old and pregnant with my second child. During my first pregnancy I inhaled pulmozyme, aztreonam and hypertonic saline and did not think about it. I took the whole time cefuroxim as an oral antibiotic. During this pregnancy I informed myself via the internet and found reports that dehorted the usage of pulmozyme and aztreonam during pregnancy, now I do not know, what to do. I stopped cefuroxim in august and I am quite doing well. Do I harm my child with the inhaled drugs? My lung function value FEV1 is 84%. In my center I unfortunately get only insecure answers, as I would be the first pregnang woman for them. Many thanks for your answer.
- 24.10.2019
