Topics

Salt preparations with high blood pressure and salt-restricted diet
Hello, I have a high blood-pressure and a salt-restricted diet. During the summer, I have to take salt preparations. How do I deal with this contradiction?
15.02.2021
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
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