Correctors and specifical effects
Hello, I have a quite specific and probably detailed/scientific question: correctors like Orkambi or also the following models VX-661 etc. change also the salt content of the sweat etc, everything is regulated. Has this also an effect of the specific smelling of a human, means his pheromones and therefore his effect on his fellows? Or are the pheromones of each human unchangable and also not really detectable and the concentrations of others, smelling ones, like e.g. changed sweat does not influence this? Many thanks
Average age
Hello, my partner suffers from CF and I have a few questions. However the treating physician has no time to answer them. How is the average age that a CF Patient can reach before he needs a transplant? (My partner is 21 years old). Respectively, can he also with his actual lung, if he takes his medication regularly and inhales e.g. reach the age of 70 or is this impossible?
Circulatory breakdown after rinsing of port-a-cath
Hello! As my veins are not good and I have many events of blood taking, I got a porth-a-cath. Half an hour later, I get extreme seizures. I have to stretch me and to yawn all the time. I get a headache and I am cold from the inside of me. Also I am bit confused then. However only a bit. Why does it happen? I have a diabetes type 2 and I am in treatment for hepatitis C. Many thanks for your help. Best regards
Treatment recommendation for persistent Pseudomonas/Staphlococci infection
Dear team, I have received a lung transplantation (2010) and suffer from CF. For 6 months, my lung function decreases rapidly and since then, it is constantly low. Antibody tests, bronchoscopy, CT and x-ray had already been done. Only in the bronchoscopy, Pseudomonas and Staphylococci could be detected. All other tests had been negative, therefore no transplant rejection. It is still like this, that I do not have secretions, even if I inhale with hypertonic saline 6%, beta-mimectis and tobramycin. Furhtermore I received in the last months 3 therapies with moxifloxacin and icreased cortisone (50mg prednisolone). Azithromycin is for the last 6 months my long term therapy (3 times a week). None of all therapies brought success. The lung function stays on the low level. In former times, I did a lot of sports. This is unfortunately also a burden and no joy at all. Would you have an idea, what the problem could be? Many thanks in advance
Sweat test
Hello, my daughter has had a sweat test in a CF center. I have been told, that for diagnosis only the chloride value was important, this could however take some time. As I am a worrying mum of a perterm baby, one could see my fear and I got the information that the conductivity was about 35 mmol/l. Can I relax a bit or is it possible to have the combination: normal conductivity but pathological chloride? Many thanks for your efforts
Cleaning of holiday appartment
Hello, many thanks for your support! We would like to go to a holiday apparmtent, soon. As one never knowns, who lived there before (dogs etc.) I would like to know, how I can get the floor/tiles quite sterile. Our daughter is 14 months old, crawls and therefore is in constant contact with the floor. She suckles her thumb and does not take a pacifier. Are there any other things, that we should take into account in a holiday appartment? Many thanks
CF and scoliosis
My 13-year-old daughter has a scoliosis of over 40 degrees. It is probable, that the bending is getting worse the coming year. Is it a disadvantage if the spine is not operated (conerning the lung function)?
Parents - carriers of CF mutations
Good morning, I am at the 12th week of gestation with my second child, and my doctor recommended to check for CF, something my gynecologist had not recommended during my first pregnancy. I was checked for 85% of the CFTR mutations and I was found to carry the G542X mutation. My husband was tested for 100% of the mutations and he was found to carry in heterozygotic the mutations F1052V and G1069R in exon 17b. We will do a trophoblast test in a few days. What really worries me is my son. He is 2 years and 3 months old. He is healthy, with no problems and excellent growth. Everybody thinks he is older. He received an IRT test when he was born, and it was negative. My pediatrician tells me not to worry. What do you believe? Thank you!
Juvenile arthritis and CF
I have a 4 year old boy who was diagnosed with juvenile arthritis 2 months ago. He has started treatment. His weight is the same the last few months, something that worries me. He weighs 14 kgr and is 103 cm tall. Since last week he has a productive cough, which has not got any better, despite taking aerolin. Before he started going to day care at the age of 2.5 he was sick only once. His stool looks normal, but do not always sink, especially when he is ill. Do you think he has CF? His sweat seems salty, but the same is true for his father, who does not have CF. I would like to know if the sweat test is influenced by cortisone.
CF possible?
Hello, my daughter is 14 months old and has, after a severe infection with RS virus at the age of 9 weeks, persistent bronchial problems, she gets an inhalative steroid and montelukast permanently. In the last 2 months she had two times a bronchitis and 2 pneumonias short after the other that had been treated in hospital. She is of normal height and weight for her age. She has 3-4 times stool per day, often with rests of the meal in the stool, what I associate however with the lack of chewing due the missing teeth. Now 2 sweat tests had been done, the first value was 53 and the second value at the second test 40. My question is, is the illness of CF excluded? Many thanks for your answer!
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