Topics

Kluyvera ascorbata in the sputum
Hello, in my last sputum sample there were besides Staphlococcus aureus and Aspergillus fumigatus the above mentioned bacteria. My treating physician thinks that waiting would be the right decision, until the next sputum sample. The symptoms I have did not change. I never heard anything about this bacterium. Could you give me some information about it? Many thanks
14.08.2017
PA MRGN 3/4 dealing with other people in everyday life
Dear expert team, I suffer from CF with the above mentioned germ. How to deal that status, if I am in public places? Concrete: can I visit a public swimming pool? Should I advise friends (non-CF/ "healthy") to protect themselves in case of visits at home, for some hours or overnight? Should one / has one to inform a person who wants to share an appartment with me before signing the contract? Etc.....etc....I think, the topic is clear. Many thanks ideally for official recommendations. S.
28.07.2017
Looking for mucolytic drug
For a short period of time, I cannot get the oral mycolytic drug ambroxol anymore, that I took for the last 30 years with success. Therefore I am looking for a new oral mucolytic drug. Do you have a recommendation which one to choose? F. 45 years old
28.07.2017
Family and transplantation
Dear expert team, my husband is just before coming on the lung transplanatation list. We have 2 children (2 and 6 years old). WE have been told, that he cannot come home after transplantation and cannot have contact to his children. I doubt this. What is your opinion? Best regards, C. M.
28.07.2017
Segniliparus rugosus infection of the lung
Is there any experience with the treatment of Segniliparus rugosus? Many thanks. Regards, B.K. [name shortened by ecorn CF]
17.07.2017
Potting plants
Dear expert team, My daughter has CF and is 4 years old. We want to pot plants in huge pots. I thought my daughter might help with that, however she shoud wear a mask. Is it really necessary? How high is the risk that she aquires problematic germs like fungi, Burkholderia cepacia.., when potting or later when watering the plants ? Many thanks for your answer, Best regards, EM
17.07.2017
Towels: how often do we have to change?
Dear expert team, my daughter (CF, 4 years old) uses in the kindergarten a cloth towel for drying the hands (mouth, face) after washing; those are changed every day, therefore she gets a new one every day. Until now she got every time after washing her hands a fresh towel - in order that she does not use a wet towel with probable germs in it. However I ask myself now, how fast germs grow or it it would be sufficient if she gets a new towel in the mornings and the next new one at lunch time? She is about 6.5 hours in the kindergarten. Thank you Best regards! EM
17.07.2017
Lung transplantation / mycobacteria
My niece has CF, now the mycobacterium has been found ... according to the physicians she will get a lung transplantation...however the hospital is refusing to do it because of the mycobakterium. My question, which hospital would take a CF patient with mycobakteria and also do the operation? It comes out to be difficult and I find it personally evil that everybody refuses to do it.... Best regards,
17.07.2017
Thyroid gland and CF
Hello, what effects does the illness of CF has in general on the function of the thyroid gland? And are the values in the CF centers checked regularly? So, would an over- or under-function came out? Or does one has to look for it specifically? Thank you
17.07.2017
Flight travel with haemoptysis
Dear expert team, I have a stable CF with a vital capacity of 95%, FEV1 of about 80% and PEF about 80%. CRP 1. No infections in the last 3 years. Stable weight of 70kg/1,71. Since a short period of time I have a bit blood in the sputum. A few days ago, after I ran to the busstop, I realized more blood in the sputum, which has been totally red once. Then I made an inhalation pause and took care of myself for the following two days. Now I started to inhale again an have ongoing blood in the sputum. I have read, that blood in the sputum in case of CF could be normal due to inflammations. As I plan in about 3 weeks a flight to italy (duration of the flight 2 hours): do you consider the flight travel to be a problem because of the blood in the sputum? Best regards, M. (52 years old)
17.07.2017
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