Topics

Chance of CF
Our baby was born at 33 weeks of gestation. The IRT test as a newborn was negative. The birth weight was 1650 gr and the first 5-6 months the baby gained weight very satisfactorily. Suddenly, he started having recurrent bronchiolitis. Since then he gained 200 gr monthly. Now, at 7,5 months of age (not corrected) he weighs 7100 gr. What are the chances of the baby having CF?
02.06.2014
Do MCT-fats still have a justification in the nutritional management of CF?
There are manufacturers, who recommend medium-chain trigycerides, MCT, for patients with CF, like it was common practice in the 80ties of the last century for CF patients, before the micro-encapsuled digestive enzymes came on the market. From a medical point of view, is there still an indication for patients with CF to use of MCT-fats or should this generally be dehorted?
02.06.2014
Pulmozyme® 2 times daily more effective?
Dear expert team, my daughter (nearly 2 years old) inhales for some time once daily with Pulmozyme® (rh-DNAse) in the mornings, before this and in the evenings with hypertonic saline 3% with 7 drops salbutamol. She has an impaired ventilation of the right upper part of the lung (near the "location of the thymus"). If the impaired ventilation area is not getting smaller/disappearing by the inhalation of Pulmozyme® once daily, could probably, according to your opinion, the twice daily inhalation (in the mornings and additionally in the middle of the day) with Pulmozyme be helpful? Or can the twice daily inhalation of Pulmozyme® be harmful? Many thanks!
02.06.2014
Better lung function
Hello, I am suffering from CF and for one week I am doing with a lung trainer 10 minutes breathing exercises daily. Conclusion after one week: the FEV1 value has improved 7 points. My question is, how far can one train the lung in order to achieve a "normal lung function" again in the frame of CF? My current FEV1 is 50% and 78% vital capacity at the age of 39 years. Additionally I do Yoga, no sports. I am very enthusiastic that something is still possible in the direction of positive push via training of the lung. Yours sincerely, E.
02.06.2014
Puffy belly
Hello, I am a 43 year-old patient with CF. I am now on the waiting list for two new lungs. My lung function fluctuates around 30 %. I do not have liver problems, and in the screening, no complications were found. The only thing I have problems with lately is a very puffy belly. In the evening there is so much tension on the belly that it seems as if I am pregnant. I’ve heard this complaint from other patients with CF and I have also heard that when you have bad lungs, your abdominal cavity is more filled with lungs because they are “elongated” to compensate the lack of oxygen. My BMI is alright, but it seems there is more fat around my abdomen than elsewhere. I also have diabetes and use insulin. Can you tell me if it is common that the abdominal circumference of CF patients increases, although the BMI is average? Thank you for your reply.
02.06.2014
Rabbit
Excuse me, my daughter has CF. She would like to have a rabbit. Is this possible?
02.06.2014
decanter with filter
Can we use a filtering decanter for the drinking water? If yes, are there particular precautions?
27.05.2014
Inhalation chamber
Hello, Can you give advice to us parents how to clean the inhalation chamber: frequency, product to use ... Thanks in advance.
27.05.2014
N30 Pharmaceuticals company
Hello Do you have information regarding the progress of research performed on 2 molecules ((n91115 et n6022) from N30 Pharmaceuticals company? Can we have hope that this type of drug could emerge soon? Do you think that these molecules and the miglustat, based on their mechanism of action, could be polyvalent and have an effect on all mutations? Thank for all you do for parents and patients. Best regards
26.05.2014
Smell after drain = danger for health?
Hello, I have come accross on contradictory information during my own research in the internet. I have the problem for a long time, that it smells uncomfortably in my kitchen. The source can not be localized, only one thing is clear: the smell does not come from the drains themselves (there is a sink and a complete shower with boiler and pump in the appartment). In spite of several atempts of the landlord (drain of the shower into the wall has been sealed anew, the pipes that are outside the wall have been completely changed) it continues smelling. One has to say that those works have not been carried out from a company, however only sparesly professionally from the owners of the house themselves. Is that a possible risk for me (CF patient) concerning the germs in the air? Resectively, is the overall showersSituation dangerous for me (boiler, that has to be switched on before showering, in order to have warm water 10 minutes later, drain, from which sometimes water "bubbles up" again)? I am thinking of lowering the rent respectively to look right away for a new appartment. What do you recommend? Many thanks in advance.
26.05.2014
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