ecorn-cf: App. question list

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Can Pulmozyme® be inhaled with the EFlow®?: Hello, I read in the package insert that Pulmozyme® (DNASe) should not be inhaled with ultrasound nebulizers. Regards; 02.08.2012

Salt tablets: Hello, When my son (CF, 14 years old, 1.63m and 48.7 kg) pushes himself too hard during exercising in the summer, he becomes pale in the face and complains about nausea. We were recommended salt tablets. On the internet, athletes say that those tablets are not very easily digestible and that an overdose can cause diarrhoea. 1) Which manufacturer of salt tablets and which dosage would you recommend? 2) If one prefers isotonic drinks, which ingredients are important? (They often contain mostly calcium and magnesium.) Would potassium and sodium not be better? Many thanks.; 02.08.2012

Loss of vitamins due to blending of selfmade smoothies: I (CF, pancreas insufficiency, much sport) pay a lot attention to my nutrition. However, as I have hardly any appetite on “real” food during the summer, I live preferably on self-made smoothies. My favorites are: 500ml certified raw milk, 1 banana, ½ mango, ¼ pineapple or apricots (about 500 kcal) or 300ml puree of carrots with 2 bananas (about 300 kcal) and a pinch of salt and curcuma each. I buy the certified raw milk at an organic food store (so hygienically o.k.) in order to strengthen my immune system and above all because it tastes better and I tolerate it also better compared to the normal homogenized milk. I also grew up with fresh milk, so there should not be any concerns. Now I have read, that blending (mixing is also a sort of blending) leads to a loss of vitamins in the food. Unfortunately I only found this single sentence on this topic. Therefore these are my two questions: 1. Is it really true that mixing causes a loss of vitamins? If yes, how high is this loss? 2. Are the protein and fat of the certified raw milk also destroyed due to mixing and does it then resemble to the fat respectively protein of the homogenized milk? Many thanks for your answer, Yours sincerely, A CF patient; 02.08.2012

Azithromycin: Hello, I am 37 years old and have CF. I am currently taking azithromycin again. Are there any long-term studies on the effects of this drug? Improvements in lung function, etc.? Many thanks.; 02.08.2012

Delta F508 and Henoch-Schönlein purpura: Does Henoch-Schönlein purpura occur often in the context of CF? My son, who is now 18 years old, does not seem to get rid of it. Also: are there any new drugs for Delta F 508? Many thanks and kind regards.; 02.08.2012

Getting pregnant with CF: Dear expert team, I would be interested to learn about the getting pregnant with CF. I am 24 years old and pretty stable. My FEV1 is at 70-89%, and I am 165cm tall and weigh 48kg. I have thyroid hypofunction (2.89). What about fertility? For a “normal woman,” there is a 25% chance of getting pregnant in each cycle. Is that also true for women with CF? Also, the mucous in my lungs is rather viscous and I therefore take acetylcysteine 600mg. Does this also help make the cervical mucous more liquid? Which other possible measures can I take to make it work? I do have a regular cycle, mostly between 28 and 31 days. Kind regards.; 02.08.2012

Continued fever with CF: Dear expert team, our 14-year-old son has been running a fever of more than 39 degrees since April. He has P. aeruginosa, mycobacterium abscessus and ABPA. He has a port that was already contaminated with staph epidermids and changed in 2010. Currently, he is taking Tobi® (tobramyin), tazobactam [translator’s note: the original question says “taxobact”], vancomycin i.v., clarithromycin and an antimycotic (not Sempera®) orally. In addition, he is inhaling MucoClear® (NaCl) 6%, Biklin® (amicacin), colistin and Pulmozyme® (DNAse), plus salbutamol and Atrovent® (ipratropium bromide) as dosage aerosols. Do you have any advice as to what else we could do? Kind regards and many thanks.; 02.08.2012