Ventilation system
Hello, At the moment we are planning to build a one-family house. In the meantime our daughter, 14 months old, has been diagnosed with CF. Therefore the question arises, what we have to take into account concerning the building of our new house. So far, we only got the advice to install wash-basins without overflow etc. Because of the way houses are built today (the house is totally isolated against the outside), it is recommended to install a ventilation system (not air-conditioning), which exchanges the air automatically. Is there the danger of getting Pseudomonas bacteria into such a system multiplying in there (probably because of condensating water)?
CF at the age of 58 years and with 100kg
When I was 16 I have been diagnosed with CF after a sweat test in a specialized hospital for lung diseases in Bremen. My brother died of this disease at the age of 38 years. As I have been in an extraordinary good condition until 2 years ago, I did not bother about this disease. At the end of the year 2004 and beginning of the year 2005 the problems occurred. I have been admitted to the hospital because I had only 50% oxygen in my blood. At that time point I had been living in Spain for already 15 years and since then I have been started on a therapy against asthma. I tried to persuade the physicians that I was suffering from CF, however they only laughed at me. They said I was too old and too big for this disease. They gave me cortisone and that was it . Therefore I had to bite the bullet and did a DNA-analysis on my costs. Of course I do hardly understand the result. In addition, I do not have the possibility to contact a CF specialist here in Spain, as there is only one children hospital near Valencia and they don’t take me there. So this is my request to you: what does the following mutations mean: : S549N, S549R, R553X, G551D, V520F, I507del, F508 del, 3876 delA, 1717-1G--A, G542X, R560T, 3120+1G--A, A455E, R117H, 394deITT,2183AA--G, 2148delA, 2789+5G--A, 1898+1G--A, 621+1G--T, 711+1G--T, G85E, R347P, R347H, I148T, W1282X, R334W, 1078delT, 3849+10kbC--T, R1162X, N3656delC, 3905insT und polimorfismo: 5/7/9T. I would be very grateful for your help. I would like very much to quit the cortisone therapy and to prove the normal lung physicians that I am not suffering of asthma. Please help me….Many thanks.
Smoking with CF
My boyfriend (26) suffers from CF and he smokes a lot and he doesn’t try very hard to live a healthy way of live; probably due to his view of live influenced by the illness. Probably I could give the answer myself, but it is obvious that smoking etc. worsens the situation a lot, or not?
Hygiene of Pseudomonas
Taps and Pseudomonas
Dealing with dogs / pets
Without doubt this is a frequently asked question, however I am not sure about this: is it advisable to avoid dealing with dogs? Which kind of pets are advisable for CF-patients anyhow?
Sweat test
Hello, a sweat test has been done to my daughter. The result was 61 borderline. What does that mean?
Factor V-deficiency
Dear CF-team, My doctor in charge said once to me that I had a factor V-deficiency…can somebody explain to me what that means, it must have something to do with the blood….Do I have blood that is to thin or to thick? I would be happy to get a more detailed explanation from you. Yours sincerely,
Gene mutation of delta F 508/2789+5G-A, Work in a pigsty
Dear expert team, I am 37 years old, male and I am suffering of a very mild variant of CF. I have the mutations F 508 and 2789+5G-A. My brother died as a child because of CF. Can you give me some information about my mutations? Is it possible that my health condition will worsen sometime? Now I have another question: in the last time I have been visiting a friend frequently and we were in his pigsty, where the strong smell caused light pain in my lungs. Is it advisable for me to avoid stables in general? Many thanks in advance, Yours sincerely
New type of cough
My daughter (4 years old, CF) received an antibiotic therapy (cephalosporine) 6 weeks ago because of a severe cold (rhinitis). The rhinitis disappeared after the therapy. A severe, strongly mucous cough, coming from the deeper airways, however, did not disappear, even after a second course of antibiotics had been given. After she has coughed out the mucous, her situation becomes the same as before coughing within a few minutes and she is hardly able to breathe-especially at night. She did not have such a kind of cough before. During an investigation at the paediatrician the lung sounded normal 3 weeks ago. What can be the cause of this cough? Thank you very much and best regards,
CF in adults
Is it possible to get CF as an adult? Our twins have been diagnosed with a protein-S deficiency and 4G/4G polymorphism in the prothrombin gene. My husband has the protein-S deficiency, but the 4G/4G has not been tested. For one year now he suffers from mucous sputum with continuous cough and shortness of breath. An allergy test and a CT-scan did not reveal any new findings. He is thought to belong to the rare cases of patients whose illness can not be explained. His grandfather died 1964 of TB, he however is born in 1965. At the moment he takes Tiotropiumbromid for medication.
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