Topics

holiday
My daughter has a friend with CF. They are going on vaccation to Barcelona. What should her friend do to organize that flight? R.L.
14.03.2013
Tolerability of Cayston®
Hello, I have CF and asthma and therefore I inhale Cayston® (Aztreonam lysine) every second month (intolerability of Tobi® (Tobramycin inhalation solution) and Colistin)). I tolerate Cayston® better but only if I dissolve it with 0.9% NaCl and not with 0.17% sodium chloride solution enclosed by the company (cough and burning during inhalation, increased constriction). Is the effect garantueed even so? The amount of sputum decreases clearly in the third and fourth week.
14.03.2013
Diagnosis
Hello, I have a big problem, my son, who is 6 years old, was born in the 27th week of gestation. He had problems with bowel movments from the first day on and was not able to evacuate his meconium. On the third day after his birth the doctors wrote down the following: "Extremely dilated bowel loops, including the stomach. Differential diagnosis paralysis of the bowl, a volvulus as well as a meconium ileus cannot be excluded. In the course of time accentuation of loops with thickening of the wall in the lower abdomen respectively fluid collection in the right middle abdomen, no evidence of NEC (necrotizing enterocolitis) or stenosis." Furthermore, they wrote about his lungs: "Pneumothorax of the right apex of the lung with beginning mediastinal shift to the left side. Badly aired lungs on both sides otherwise without pathological findings, after drainage complete regression." At the age of 3 years he had an anal prolaps. Up to now he is not able to evacuate stool without enema or drugs. He has had several colds, however not very striking. He his very small and tiny for his age, so that there has also been the suspicion of hyposomia. Now we have come over three circuits to the CF-center, there a sweat test has been performed three times, all three test results were borderline. Then, a genetic testing has been performed, that tested for the 30 most frequent mutations. This test has been negative. The doctor in charge said that according to his opinion, the investigation is finished with that. Now I stand here, my son is still coughing until he vomits, is not able to evacuate his stool and does not thrive. Now my question is, what can I do? It cannot be normal that one coughs like this and cannot go to the toilet? The sweat test results have all three been borderline, the "small" genetic test however negative. Which investigations can I do further? What do you think about the medical history of my son? I thank you very much for every answer. Best regards, J.
14.03.2013
Pseudomonas
If I touch the hand or foot of a person with pseudomonas, is there a chance I could get infected or carry the bacteria to a third person?
05.03.2013
Life expectancy
What is the life expectancy of a girl born in 1994?
05.03.2013
chest congestion and frequency of physiotherapy sessions
Our son, aged 5 has always attended three physiotherapy sessions a week without showing any respiratory symptoms until now (little cough, no sputum). The therapist has told us that the sessions are becoming productive and offered to step up to daily sessions. Is there any way to know if this congestion will be permanent (meaning the illness evolved and this situation will be definitive) and/or occasional and therefore require a temporary intensification of the drainage?
05.03.2013
Physiotherapy student
Hello, I would like to start helping with cystic fibrosis as soon as possible and I am currently in my first year at a physiotherapy school. How can I help (internship, training, volunteering)? Thank you for your understanding.
05.03.2013
carriers
Is there anything known about CF carriers? Do they generally have more “CF like complaints”? Or is it a coincidence that CF carriers in our family have more intestinal and pulmonary complaints? Has research on this topic already been done (f.e. abroad)?
05.03.2013
systematic sputum / cough swab culture
Hello, The CF centre of my daughter does not practice cough swab systematically at each visit. We are afraid of missing out a bacterium that could worsen the health of our daughter. We are in February and the last culture was done in September. Can I ask them to do it consistently? Can a local laboratory do the cough swab culture? Cordially.
04.03.2013
Relation Physician / Patient
Why so many patients need a website like this one to get answers to their concerns, their issues, their anxieties? I myself have asked you a question: you answered perfectly. I just regret that no more doctors are not very available to listen to patients. THANK YOU ALL
04.03.2013
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