follow up the disease
My baby has deltaF508 and R1070W and is almost healthy (details are in a previous question). How do you recommend to treat the baby so that we do not tantalize with many investigations but also keep on eye on the disease. E.g. it was recommended to me to do monthly analyse of sputus, but I see ...
Lung Clearance Index
In witch hospital from abroad, could we do the lung clearance index for a child, 3 years old, with cystic fibrosis? We are interested in a hospital who receive private patients. Can you send me contact details? Thanks
What is so special about the nails of children with CF? In one of the first contacts with our doctor he checked the nails of our baby son, but we forgot to ask him what’s so special about nails in CF.
Lung rupture
I have a question: if one has a lung rupture (pneumothorax), is this treated with surgery? And if the surgery has been performed, is it possible that one is getting a tube? Is it normal to be released from the hospital the day after surgery? And if one then has problems breathing, is it true ...
Hello, Does a CF person who would never have pulmonary infections preserve his/her lungs or do the lungs will be however involved ? Thanks.
Coughing at night
I asked a question but forgot to mention that my husband has CF. Since a few months he coughs almost every night as soon as he goes to bed, the coughing can last hours, is very energy consuming and results in not enough sleep. Tiotropium bromide inhalation seemed to work for a while but not ...
Lung bleeds (hemoptysis)
Is there something to prevent lung bleeds? My son has recurrent lung bleeds and he is fed up with it. Already 4 times he had embolization done and he doesn’t want it anymore. Is there something that can straighten his veins ?
Shortness of breath
Hello, I seem to have problems like an asthmatic patient but I do not have asthma. I do not have oedema, I do not have allergies, nobody seems to be able to help me and I have been tested for very many disease. What do you think?
Recurring infections
Hello, My son has infections permanently. After a fortnight-long oral antibiotic treatment he gets a new infection at the latest after another 14 days. He is desperate and would like to have a longer healthy period. School attendance is also heavily affected. Best regards
Mycobacterium abscessus and impaired function of the liver
My 24-year old female patient has a colonization of the airways with M. abscessus for 9 months. There are hints for an infection of the lung with M. abscessus (decrease of FEV1, infiltrations, cultural and microscopical detection of the germ in the bronchial secretions and bronchoalveolar lavage). ...
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