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3mrgn
Hello, A friend of mine works in a domestic nursing service and got in contact with a patient who has this disease. Since then he has been doing badly. He went to the doctor and they took some samples and sent them to the laboratory, but the results will only be there next Monday. Can anything happen in the meantime? Can he still be treated afterwards? Does any danger exist?
15.09.2015
Cystic fibrosis with 66 years
At the age of 16 years I was tested positive for cystic fibrosis. My brother who also had CF died at the age of 38 years (1985). Till 2005 I had no problems. Then the lung infections etc. began. I lived in Spain and I was not treated CF specifically because the finding was not taken seriously; not even when I had a genetic test done on my own costs which was clearly positive. In 2012 I moved to Austria. Here, the sweat test and also the genetic test were repeated. The result of both showed clearly that I have cystic fibrosis. As one might expect, I was also tested positive for pseudomonas. Since then everything has been tried to eradicate the pseudomonas, but everything, all inhalations, Ciprofloxacin and infusions have not changed anything. Possibly I have had it for decades. I am feeling like a “guinea pig” and I am really tired of it. I am 66 years old, and I am feeling relatively fine. At night, I need oxygen though. My question is: Can I just ignore the pseudomonas? I have been having it for sure for decades. Is it still even possible to eradicate it? Thank you in advance for your time. Lilac
15.09.2015
Respiratory signs
Hello, My one year old CF baby has important digestive symptoms but no respiratory signs, even having had nasopharyngitis, I have not seen significant differences compared to another baby. Do you think the respiratory involvement will be limited or it will appear in the forthcoming years?
15.09.2015
Advice for dwelling
Hello, I am seeking your valuable advice to help me find the dwelling place that would improve my health. I am CF, 4 years ago I left Paris and pollution to be closer to the oxygen say near the forest of Fontainebleau. Unfortunately I have not thought at all to the problems that home moisture could trigger that is a big disease aggravation in the fall (I started to perform pre lung transplantation assessment ...). Therefore, it is VITAL to leave this area and I am now ready to consider moving outside the Ile de France. So I am searching a sunny place, but not very hot in summer, less humid, very few polluted. It is very complex. I conducted various analyzes graphics on rainfall, temperature, terrain, streams ... but I would like your expert opinion. Should be avoided in my opinion two axes: one that includes the departments above the Loire, Normandy and Northern France (due to excessive moisture) and the second axis extending from the Alsace Lorraine Region of Lyon and Provence Alpes Côte d'Azur (large temperature differences being harmful, so no semi continental climate, polluted and too hot in summer areas). The area of Toulouse, Agen and south are too hot in summer for me too. The study of the rainfall is certainly important, but the humidity also depends on the winds, geology whether it is a land that drains water or not ... Following this rather long description, what do you advise? Thank you a lot of attention to this email, I am eager to hear your opinion
13.09.2015
Emergency: Rare Disease Personal Card
Hello, My daughter has CF. She has got an accident and was referred to the hospital by an ambulance. Fortunately conscious, she was able to direct the hospital staff especially concerning an injection of morphine. Can you tell us if there is a formal document available to doctors in case of accident with loss of consciousness ? My daughter refuses to remain hospitalized for further tests for fear that they provide not recommended care for her pathology. Who can do this kind of document that she would keep close to be reassured? People around her were helpless about this situation. The accident is not related to her illness. Thank you for kindly informing us. Sincerely.
13.09.2015
Drinks
Hello, As a Mom of a CF girl, I would like precisions on drinks. Indeed, we were always told to give her of the bottled water only 24 hours after opening. Is it the same for milk and fruit juices? Thank you in advance for your answer.
13.09.2015
Viral infection- Pseudomonas
Hello, How can it be explained, that in case of a cystic fibrosis patient (a toddler) a harmless viral infection can cause every time a pseudomonas colonization? Till now, the pseudomonas could be eradicated every time; but as the next viral infection followed, the pseudomonas could be proved again in the routine smear. Is the mucosa more vulnerable for pseudomonas during a viral infection? Or is it just explained because of the increased mucus? Observing such a regular relation between a viral infection and pseudomonas colonization, is it reasonable to treat such a viral infection immediately with an antibiotic (Ciprobay®?) in the beginning, in order to have a prophylaxis against pseudomonas? How are the current guidelines for a pseudomonas eradication (not mucoid, pseudomonas antibody negative)? Thank you very much!
13.09.2015
Paranasal sinuses
Hello, When a child with cystic fibrosis has a “blocked nose” for 2 weeks, and the secretion is just liquefied through inhalation with MucoClear®; should one then begin with an antibiotic treatment in order to prevent a bacterial infection of the paranasal sinuses? Is this also true if there isn’t any infection of the bronchi and the lungs? I mean if there is just a persistent flue for 2 weeks, without any fever, cough, or any other symptoms. Or can we just wait, until (if) fever, cough or any other symptoms occur? Thank you for your assessment.
13.09.2015
Prenatal diagnosis
Hello, We have a 5 year-old daughter who was diagnosed with cystic fibrosis at the age of 4 months. Since this day we have been in safe hands in terms of medical and physiotherapeutic care. Our daughter is fine, till today she has not had any evidence of problematic germs. We have our therapy and she can lead an ordinary life with kindergarten etc. The issue of a further child was never really defined for us. A PID (preimplantation diagnostics) is definitely excluded for us, and now I am pregnant again. We are well informed about cystic fibrosis and know the risk of 25% of its inheritance. Now, I am in the 7th week of pregnancy and we are wondering if we should have a special examination like chorionic villus sampling or amniocentesis done. Even with a positive result of cystic fibrosis we would decide to keep the baby. To me it is just a question of certainty, whether the baby has cystic fibrosis or not. Can one prepare oneself for this better in the clinic? How high is the risk of these interventions? And especially can one do anything immediately after the birth that has a positive effect on the progress? I would be very thankful for your assessment. Greetings
13.09.2015
Long term antibiotic treatment Cefuroxim
Dear experts, I am an adult cystic fibrosis patient (> 45 years old). Currently I am taking Zithromax® (Azithromycin) 250mg as a long term antibiotic treatment every two days. Furthermore, I inhale Pulmozyme® and Colistin®. I have problems with sinusitis. Polyps are excluded. The last testings of the sputum and nasal secretion showed a resistance to Zithromax® every time. This often leads to an acute infection, and then another antibiotic has to be used, according to test results. My consulting ENT specialist wanted to try a long term antibiotic therapy with Cefuroxim, because it is sensitive till now. But the cystic fibrosis clinic said that this is not common. There are just experiences with Azithromycin, but I read in a forum about a case where a a long term antibiotic therapy with Cefuroxim was made. For one year [as it reads in the forum] the patient has had hardly any infections and no problems with the paranasal sinuses. She found it totally awesome. My question: Could Cefuroxim be used for a long term antibiotic treatment with a lower dose? Regards, S.
13.09.2015
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