Topics

Does the place of residence influence the course of the CF?
Dear expert team, I ask myself, if the place of residence influences the course of the CF? That means concretely, if CF patients should prefer a residence next to the sea and if those who live in the up-country have a disadvantage due to the air there? Are there any studies on this topic? Is the quality of life and the life expectancy better/higher in the CF centers near the coast compared to the centers in middle and south of Germany? Thank you!
17.02.2014
CF and airing of the house, house building
We have the possibility in our new house to use the air that has been cooled down in earth wires as airing for the rooms and air-conditioning. As our daughter is a CF patient, we ask ourselves if in the wires Pseudomonas aeruginosa could grow and can distribute via the air-conditioning in the house. Here, it deals with a controlled air-conditioning / room-airing like in a passive house. We ask for help in making a decision. Best regards, family L.
17.02.2014
Lung after DLTX (double-lung transplantation)
Dear expert team, in case a CF patient has had a lung transplantation, is and stays the lung "free of CF" then? That means: does it not congest with mucus anymore? Or does one have to go on with physiotherapy and inhale mucolytic drugs? Many thanks!
17.02.2014
Strongly increased fat excretion of our son (4y)
Dear expert team, in the frame of two stool fat collections an increased excretion of fat (up to 45%) has been diagnosed. More than one year ago, this value was however much lower. We ask ourselves, if such a deterioration is "normal". Our son "chews" the Kreon always 2-3 times, before he swallows it. Can this be a problem? Which consequences may such a high fat value have? We would be very happy about answers to our questions. Best regards, M.
16.02.2014
Kalydeco® off-label
Dear expert team, my son has the following CFTR mutations: 1717-1G>A (class 1) und die mutation S549R (gating/connection, class 2 oder 3) Kaleydeco ® has indeed at the moment only market authorization for the class 3 mutation G551D. However, tests with other mutations have been done. There it could be shown, that Kalydeco® is supposed to have a similar effect on all other gating mutations as it has on the mutation G551D. An application for all other non-G551D gating mutations has been subscribed to the FDA [American Food and Drug Administration]. Furthermore, other tests are underway, e.g. residual function. The other mutation of my son belongs to this group. Whereby it has to be remarked that besides the mutation still a little function of the CFTR has to be present. I cannot make a judgement about this. It is simply like this, that my son is doing well. The weight is all right, i.v. therapy only about one to two times a year, frequently Staphylococci, no Pseudomonas, or other bacteria. Whereby this is however true only for the moment. In order to avoid a worsening of the health situation of my son or to delay it, we would like to implement Kalydeco®. Now to my question: What do you think, is Kalydeco® medically indicated for my son? Many thanks for your answer
12.02.2014
CF carrier
Hello, I had a dry test and I am carrier for CF. After my results, my husband had a test(38 mutations) and he has the result: 1. No pathological mutation was detected 2. 7T polymorphism was detected. What does it mean? Might the child have a health problem? Thanks
12.02.2014
cystic fibrosis in a 3-year-old child
I have a 3-year-old boy diagnosed with CF, homozygous delta F508. Can he take Pulmozyme® and what is the dose, given that in the prospect is specified only over 5 years of age? Thank you
12.02.2014
Disinfection of inhalation device
Hello, how do I disinfect most effectively the different parts of the eFlow after inhalation, in case there is no vaporiser, electric water jug or similar devices and there is even not the possibility to heat/boil the different parts? Are there special solutions, in that the parts can be placed? Many thanks, Best regards, V.
11.02.2014
Atypical from of CF
Hello, I am 35 years old and in the frame of an genetic investigation it came out that I am a carrier of CF. When I was a baby, I had a strong pneumonia. I suffer from allergic asthma and have slight clubbing of the fingers. A recently performed sweat test had a result of 42 (control area). In the department of pulmonology (of a German university hospital) a lung function test had been performed. The result was without pathological findings (98%). The blood values had no pathological findings, either. Now, an ultrasound of the upper abdomen and a lung CT are planned just to be on the safe side. As I am in general free of symptoms, an atypical form of CF could be underlying. At the moment, a full sequencing of the genetic is done. My question:which further treatment would you recommend and what should I pay attention to the next years?
11.02.2014
CT of the lung appropriate?
Hello, I am 35 years old and in the frame of an genetic investigation it came out that I am a carrier of CF. When I was a baby, I had a strong pneumonia. I suffer from allergic asthma and have slight clubbing of the fingers. A recently performed sweat test had a result of 42 (control area). In the department of pulmonology (of a German university hospital) a lung function test had been performed. The result was without pathological findings (98%). The blood values had no pathological findings, either. Now, an ultrasound of the upper abdomen and a lung CT are planned just to be on the safe side. My question: is it not overdone to expose oneself to radiation, if I have otherwise no complaints? Or do you recommend a CT scan in this situation?
11.02.2014
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