Topics

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
NIV (non-invasive ventilation) weaning?
Hello, I am 38 years old and CF patient. Since a severe pneumonia I sleep for two months with a NIV (non-invasive ventilation) device. Now I tried the day before yesterday to sleep without NIV. This was quite ok. However since yesterday evening and today, my breathing got worse. Oxygen saturation is good, however breathing is hard and lung function at the center today was deteriorated. Now I thought, if my lung could probably have been over-stressed because of the night without NIV and now has a kind of muscle ache and has to recover first. Could that be possible? Is there any advice for weaning from the NIV? Regards,
17.07.2017
Pseudomonas Vaccine
Could you give me some news regarding a vaccine against Pseudomonas. A clinical trial was ongoing and had to end on 2015 (I read this on a posted question)
03.07.2017
Soap
I'm a CF woman. Can I use soap bars, and if so, can we use those handmade, or are there restrictions (for reasons of hygiene, stability of the product ... in the products chosen?
03.07.2017
Visit Tropical Greenhouse Zoo
Hello, Our family will soon be visiting the Beauval Zoo. We wonder if it's possible for our 3-year-old CF son to visit the greenhouses to see the crocodiles and the other tropical animals. The greenhouses look great and there is an air filtration system, but this remains a very humid environment. What do you think ? Would you let your CF child go or is the risk too high? Could putting a mask the time to cross the greenhouses help? Thanks a lot for your help !
26.06.2017
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