Topics

Safety to swim in stagnant water
I have a question whether CF patients are not allowed to swim in stagnant water. And how is it with swimming in the sea?
09.06.2011
Odd behavior of girlfriend with CF
Friendly Greetings, My girlfriend is from the USA, I am myself from The Netherlands. My girlfriend claims she has a heavy form of CF and won't make the age of 26 (currently 24 years old). Also she claims with this she needs to go to the hospital all the time and even gets hospitalized for most weekends and sometimes even the whole week. With the information I found so far, I could assume this could be correct. However the story continues. She also claims she needs to work on her school and homework, while having CF and that it takes her all day up to deep in the night. She claims to do this so she is sooner done with school and then perhaps travel to my country and study further here. A possibility, but not really a fact. She claims that she is very sexually active, but claims with this that she is not cheating on me. Well, this might be a question of trust I guess. But all for a reason that i add this, Ill explain later in this message. She also claims that she can beat marines twice her size (she is living on a US military base due to her father being there, so no training or real skills for this). Well this is very odd, she herself is just 5"2 tall and she really doesn't have much muscles to show for. Besides that CF should make her weaker like my own Asthma does with me. She plays a lot of PC games, which require a lot of mouse usage and typing. Not strange on it's own, but for someone with a heavy form of CF... shouldn't that be near to impossible? And for that matter, she works with programs that need high concentration, she makes things for games. such as tools, walls, and such that is visible for the players in the game. Something rather odd if you ask me with CF, but please do correct me if I am wrong in this. Her drawings she makes on her PC using a special pad to draw on, look stunning and pretty much flawless. Now, this seems to me a nice thing to do. But I find it very odd Now there are a few other odds and ends that are very strange for someone with CF, but more of a private matter. Now I got a tip from a American man, around our age, that claims that if she really is that far with her CF, she should be in a hospital and even unable to play games, make such things, do so much sex, etc. He even said that she most likely would be in the hospital 24/7 unable to do much at all. Now I wish to ask for help in this, to understand this all whether she is right, or these feelings of something being wrong is right. Could I please get for each part a detailed answer, preferred in English. I love her and all, but I can't stand lying and I am not a fool that just buys all this without making sure it is true or not. Thank you in advance. Kind regards, J. M.
09.06.2011
Risk of transmission of MRSA
Hello, we are a bit worried after we got the information, that the grandfather of our daughter (1.5 years, CF) now has MRSA after a long-lasting inflammation of the elbow. As we did not know, what he had exactly, he paid very much attention to hygiene in dealing with our daughter, that means few direct contact and every time disinfection of his hands before. How high do you estimate the possibility of transmission of the germ to our daughter? As MRSA is a problematic germ for CF patients we are of course a bit worried. Our CF-doctor estimates the risk under the above mentioned measures to be small, particularly as we saw the grandfather with this inflammtion only for a few days and he only wants to do a thoat swab in the middle of April as it is planned routinely. Furthermore, we consider as parents to have a swab done ourselves. Would you recommend this to us? And how do we deal with our grandfather from today on? How do we act correctly, especially with regard to our daughter? What should he or we avoid to do as long as he has the germ? Many thanks for your advice.
09.06.2011
spray
I want to know if we can use a diffuser to refresh our son (cystic fibrosis) when it is hot? Thank you for your reply
08.06.2011
Nutrition: conventional or organic?
Dear expert team, with regard to our daughter (3 months, F508del+R553X) we asked us the question of the later nutrition. Especially, we do ask ourselves, if the used antibiotics in the conventional keeping of animals plays a role with regard to later resistances. Therefore the questions: Do you have any information that the meat produced with convetional animal keeping can be dangerous for CF patients beyond the normal extent for healthy human beings? Can there be problems or risks with other conventional produced foods? Would you exclusively recommend bio-meat or bio-food? Many thanks, Yours sincerely,
08.06.2011
Outdoor swimming pool
Hello, our daughter (16 months old and CF patient in a stable health condition) loves water and taking a bath. Since the diagnosis has been made, we have not visited an indoor-/outdoor swimming pool because of the possible danger of Pseudomonas. We would not go to bathing lakes as well as indoor swimming pools with her in the future, either. In contrast, we are open against the bathing in the sea and already two holidays on the sea shore were unproblematic. What do you think about visiting an outdoor swimming pool with your experience? In this case it would deal only about the sole bathing. Showers and sanitary devices would be tabu. I assume that a big pool would be more recommendable as a children's pool. We are aware of the fact that we have to take the decision ourselves, but probably you could help us with the estimation of the risk? Many thanks for your efforts!
08.06.2011
Sanitation of the surroundings in case of MRSA
Is there any informational material (beyond the recommendation "disinfection of hands, clothes, bedclothes and daily washing of towels") for paretns of little children, e.g. in the form of check lists, how they can sanitate the home sourroundings after occurrence of MRSA in order to avoid a reinfection? I think there are pacifiers, tooth brushes, cuddly toys, doorhandles etc. to take into account and probably other things one does not think about as a lay person. Our CF center has nothing to contribute here. Thanks!
08.06.2011
How high is the risk of CF-pregnancy?
I am pregnant and the 3rd child of the cousin of my husband has now CF (both children before have also the gene but are not ill). I am now very afraid that my child has that, too. What can I do? My first child has nothing and in our family there is nothing known about disability or inheritable diseases. Can one do a test to me or to my husband if one of us also carries the gene (I thought that we both have to have it in order to bequest it) as I do not want to have an amniocentesis done unnecessarily. How can one test it? Thanks,
08.06.2011
cystic fibrosis-sweat test
I have a 9 year old daughter with diarrhea since birth, the genetic test was negative for 29 mutations, but the symptoms and the sweat test was 68 NaCl, 58 and the lowest value 48 NaCl. How many registered patients have a positive genetic test? My daughter also has respiratory tract infection with Staphylococcus aureus for 3 years, adenoidectomy and viscous secretions of the noose and stool. What should I do?
07.06.2011
question
Hello! My name is Golita Nicoleta and I live in Galati. My daughter is 15 month old and after chronic diarrhea she took a sweat test and the value of the test was 48 mmol/l. After 2 weeks we went to another center where we repeated this test and the result was 64 mmol/l. Because she was symptomatic (stool after every meal, repeated colds, salted skin) she was diagnosed with CF and she received medication: Kreon 2cps/day (morning and evening); do these enzymes must be administrated at every meal? Pulmozyme – in the morning; Ursofalk- half cps/day (TGO-26, TGP-36). Do all patients with CF receive Pulmozyme or only the ones with pulmonary affection? I mention that my daughter never did a pulmonary X-ray.
07.06.2011
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