Topics

Flight travel and blocked nose
Dear experts, we are flying to Florida (9 hours) with our daughter (10 years old). She has a blocked nose for a longer time, that is treated with the PariSinus® device and nasal shower and nasal cortinsone. She always has great pain during landing. Can one do even more? Is such a long air travel too risky, then? Many thanks for your answer.
24.06.2014
Narrowing with colistin inhalation
Dear expert team, as a female CF patient and an asthma patient with colonization of two strains of Pseudomonas (mucoid), I inhale every second month Cayston® (aztreonam), as I only hardly tolerate the other antibiotics for inhalation. In the interval-free month I got due to a cold ciprofloxacin 750mg 2 times a day for 3 weeks. In the third week a severe pneumonia occurred that had to be treated with an i.v. course for 1 month. My question is now: would it make more sense to inhale alternately Cayston® and colistin? Does colistin have a positive effect against an infection even if it leads to a narrowing and the FEV1 is a bit worse or does it harm more in this case? Are there different products for tobramycin, that are better tolerable? Many thanks for your help, Best regards, S.
24.06.2014
Camping holidays in spain
Are there hygienic concerns in case of a stay in a camping van on a campground in south Europe? Our son is 13 years old and has CF. Family B.
24.06.2014
Chance of CF for a fetus
Ι am in my 22nd week of pregnancy and the fetus was diagnosed with hyperechogenic bowel grade II. I did not have any bleeding during my pregnancy. After the recommendation of my gynecologist I did an amniocentesis and I and my partner gave a blood sample. The amniotic fluid and our blood was checked for 75% of CF mutations and all the results were negative. What are the chances of the baby having CF? Do you think we should do any further checking for a larger percentage of CF mutations, or the tests we already did provide adequate “safety”?
03.06.2014
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
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