Topics

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
High blood pressure (associated to the intake of the pill?)
My daughter is 26 years old, has CF and persistently high blood pressure, it does not matter which drugs she takes because of CF. She is doing anti-conception with the pill. Can the pill be resposible in CF for causing other symptoms compared to a healthy women, e.g. high blood pressure? Many thanks,
17.07.2017
Sucking off mucus
In the Czech Republic, it is common, to suck off mucus in children, who are still too small to cough up their mucus themselves. I read this in the internet. Our CF center did not talk about this once. My son is 14 months old, we inhale 3 times a day with 3% saline solution plus 3 drops salbutamol. Is this a common treatment in Germany, too?
17.07.2017
R334W/R117H in case of 7 T variant
Dear ladies and gentlemen, we got to know, that our daughter has a mild form of CF. She has the mutation p.Arg334Trp (R334W) and on the other allel the mutation p.Arg117His (R117H) with the 7T variant in the poly-T-region. According to our knowledge, both mutations belong to class IV. Furthermore we have been told, that the variant in the poly-T region would be most important for the severity of the clinical picture and in case of R117H 7T, a complete picture of CF would be improbable. Wich kind of clinical symptoms do we have to expect in the course of lour daughter’s life in case those two mutations are underlying? Many thanks for your help!
17.07.2017
F508del/R117H sweat test negative
Dear ladies and gentlemen, I am 33 years old. As symptoms I have only a slight “mucus feeling” in the throat, that goes away when clearing the voice. I have had a sweat test done a few days ago and had other values checked. The result of the sweat test was 19 mmol/l. Therefore truely negative. Also the other values were like from a healthy person. A lung CT will be done in the future due to the “mucus feeling” (I am still breast feeding at the moment). I am very glad of course, however I am a bit skeptical. The second mutation is there, indeed. Can it be nevertheless, that a CFTR caused defect is underlying? Could the sweat test be possibly false negative? Should it be repeated for being secure or other diagnostics should be done? In my CF center they said “definitely healthy” and the lung CT is done for the final security. Best regards,
17.07.2017
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