Topics

Christmas tree
Hello, due to our daughter's (2 years old) CF diagnosis, we are wondering this year whether we can set up my real Christmas tree with a bowl of water, or should we use an artificial tree to prevent germs from forming in the water?
20.02.2026
Cataract while taking Kaftrio/Trikafta®
Hello, Are there any experiences regarding cataracts in adolescents taking Kaftrio/Trikafta®? Can lenses be replaced in cases of cystic fibrosis, and must the medication be discontinued if cataracts develop? Thank you in advance for your reply. Sincerely,
20.02.2026
Cysts of the pancreas
My son has cysts on his pancreas and his sweat test result was 53. What does that mean?
20.02.2026
Cross-infection in the ambulant setting - complete
Hello, since I forgot some points, here they are again (sorry!) I have a question that's been on my mind. What happens if two CF patients meet outside of the CF clinic in a doctor's office, and one of them has a problematic strain of Burkholderia Cepacia? Does the patient with the problematic strain also have to wear a mask in the doctor's office? What is the risk in the following situation: the doctor's office had to be crossed twice. The first time, there was a greater distance, and the Cepacia patient wore a mask. The second time, it was in a hallway, with a distance of just under one meter. The Cepacia patient wasn't wearing a mask and said "Goodbye," but the patient without Cepacia wore an FFP2 mask and just quickly walked past, disinfecting his hands immediately after leaving the office. There was no treatment or waiting in the same room, as the doctor's office only had to be crossed twice briefly. Is there any significant risk in this situation? What's it like when you're sitting together in the waiting room? Or being seen one after the other in the examination room? The question might sound a bit odd, but since the CF clinic has even introduced special days to avoid such encounters, I'm wondering if it wouldn't be better to switch general practitioners, or if this is completely over the top. Another question: If you do get infected, are you only contagious to other CF patients? Can you not infect your own children and other family members as long as they don't have CF? And: If you have Kaftrio/Trikafta® and an excellent lung function (FeV1 94%, MEF25 98%: How long do germs survive on clothing after such contact? Best regards
20.02.2026
Infection frequency / susceptibility to infection
Hello, I am male, 28 years old, and have cystic fibrosis (CF) with the F508d mutation. I am Pseudomonas negative. For about a year now, I have been taking Kaftrio/Trikafta®, which has resulted in some improvements (almost no sputum, improved digestion, and at least some slight weight gain). However, my concern is my susceptibility to infections, which is causing me great worry: Starting with a COVID infection in November 2024, I had about 8-9 colds/flu-like infections last year (2025). In previous years, it was usually about 3-4 infections per year. These usually involved a sore throat, runny nose, headache, sometimes a cough, and lasted for 1-2 weeks. It's not just the sheer number of infections that's concerning, but also the fact that they now follow a fairly regular pattern: After recovering from an infection, it takes about 5-8 weeks for the next one to occur. I actually pay close attention to a healthy diet and exercise, but last year I was only able to do a minimal amount of the latter due to my condition. My comprehensive blood tests have always been normal/unremarkable. I have no vitamin deficiencies, and my white blood cell count and response to infections are normal. My antibody levels have also been normal. After starting Kaftrio/Trikafta®, the course of the infection has sometimes changed: With three infections, I initially had typical cold symptoms for 4-7 days, before developing a fever of up to about 40 degrees Celsius for 1-3 days, accompanied by a chesty cough. Before Kaftrio/Trikafta®, for example, I would get a fever immediately on the first day of illness with COVID or influenza, whereas with regular colds, I almost never had a fever in the past. My primary care physicians and the CF clinic see no need to investigate this further, as my blood work is unremarkable, and they say things like, "Many people get sick, some just get sick more often," or "you'll be fine again afterward." Therefore, I have a few questions, as I find this quite worrying and not normal: Do you have any ideas what the cause of such susceptibility to infection might be? What tests would you recommend? Could the start of Kaftrio therapy be related to this, or is it just a coincidence and there's no further connection? I would be very grateful for your assessment and feedback.
20.02.2026
Is ectoine good for recurring bronchitis?
Is inhaling NaCl 3% with ectoine (Pari Mucoclear 3% Protect ®) effective against recurring bronchitis?
01.02.2026
ADEK as a ready-made product, individual prescription or individually from the drugstore?
Does it still correspond to the medical consensus in Germany that cystic fibrosis patients (including those undergoing ETI-CFTR modulator therapy) should receive individually prescribed ADEK vitamin preparations from the pharmacy and have their vitamin levels checked annually – or are commercially available single preparations (e.g., from drugstores) now considered an equivalent alternative by doctors?
01.02.2026
S1235R mutation
Good evening, I am currently in the 13th week of pregnancy, and during the cystic fibrosis screening, the variant c.3705T>G (p.Ser1235Arg, rs34911792) of the CFTR gene (NM_000492.4) was found in heterozygosity. According to the CFTR2 genotype-phenotype correlation database, this variant is classified as non-pathogenic with regard to the development of cystic fibrosis (non CF-causing). The doctor recommended that my partner should also be tested. What are the chances that our baby will have cystic fibrosis?
20.01.2026
Change from Kaftrio/Kalydeco to Alyftrek
Hello, my daughter takes Kaftrio and Kalydeco for some years and is going to take Alyftrek instead soon. Do the blood values have to be controlled in short intervals even if there is a change from one modulator to the other and if yes, which values have to be controlled and how often? Best regards
20.01.2026
Elevated CK (Creatinkinase) in a baby in case of breast-feeding of mother taking Symkevi
My daughter is 7 months old, I breastfeed her and I do not want to stop it now. When she was 5 months old, I started again on modulators (Symkevi/Kalydeco =Tezacaftor/Ivacaftor) because I had a Pseudomonas then and I had been very ill with loss of lung function, etc. My daughter does not have any symptoms, but when she had a control of blood values, the CK-value was increased (544). At the first control of blood values in July the CK-value had been 400 and the GOT (ASAT) value was also increased. It is now at 79, therefore borderline. My CF-Center has no information that the CK-value could be elevated due to modulators, the pediatrician has no experience in CF and is of the opinion, this could be due to the the muscle strain as she is learning to sit. Do you have any experience with modulators and increased CK-values?
20.01.2026
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