Topics

Shortness of breath
Hello, my son (20) has had an infection 3 weeks ago and since then, he has shortness of breath when climbing the stairs etc. 2 weeks before, he had been to the regular check-up and everything was ok. Of course he had then made an acute appointment in his CF center. Nothing could be found when he presented there. Blood values were ok, sputum also – no germs, also auscultation of the lung did not show anything. He should not have shortness of breath normally, as everything is o.k. He is inhaling ipratropiumbromide and hypertonic saline 6% at the moment. The next check-up will be in August. We do not know what to do, as the shortness of breath is making his work hard (motor vehicle mechatronics). I would be very happy about advice. Best regards, T.
12.09.2016
Curcumin
I have been told by friends, that the course of the illness of CF can be influenced positively by high dosages of curcumin. Are there any interactions with the CF-specific drugs and curcumin that have to be taken into account?
12.09.2016
Essential oil
Hello, I saw all the questions/answers present on the site concerning essential oil and aromatherapy. However, I do not know: In my case, I would like to put some drops of essential oil on a cotton or on a piece of wood (typify cedar) in my cupboard , and some drops on a cotton to fight against mosquitoes. Is it like a spray? The same question on the sprays of essential oil (pure-essential type), can one use or is to avoid it? Thank you
12.09.2016
electric kettle
Is there a risk for CF people to use an electric kettle ?
12.09.2016
Adjustment of Kreon dosage to vitamins
Hello, How to adjust the dose of Kreon to take it according to prescribed vitamins? Let me explain: if our children should take 1 capsule of A313, which therefore makes 50 000 IU of vitamin A, must we match the dose of Creon and give 5 capsules of Creon 12000 (+ the number of capsules based on course meal)? For taking 3 doses of ADEC in the morning: it is 12 000 IU between vitamins A and D, it takes 2 capsules at breakfast? (1 for vitamins, one for breakfast so little fat)? Is it really a correspondence between IU (international units) vitamin marked on boxes (ADEC Uvestérol, A313 etc), and UI on the box Creon (U lipase activity 12,000 Ph Eur.)? Thank you in advance for your clarification, this point is not clear to us.
09.08.2016
Question about food hygiene
Hello, I'm a CF mother and I have questions about my diet, specifically I would like to know if foods are discouraged for us because of CF. I've always had questions about my diet and potential pathogenic germs for me. So, I have deprived me of many things for 10 years. I would therefore like to know a little more about certain foods to better enjoy them. Can you eat hazelnuts, almonds, walnuts (already shelled or still in the shell)? These products do not exist in pasteurized form, so maybe there might be dangerous mould spores in it? (I do course use common sense and always look at their appearance before consumption, but if they are in good condition, can we consume these products?) I like cooking, I recently discovered the gomasio. I'm not allergic to sesame. Could I consume this condiment (Japanese condiment made from sesame and salt to sprinkle on cereals or salads. Sesame seeds and salt are lightly grilled over a wood fire and then ground to the grindstone. Each salt particle is coated with oil of sesame seeds. This coating does not mask the flavor or nutritional qualities of sesame, but allows better absorption of salt by vegetating). Can you use fresh herbs, garlic, shallot: can you eat them raw or must they be fully cooked? Regarding the salt, sugar, should they be refined (this process purifies foods - meaning fewer germs - or can we consume the whole cane sugar and whole salt? I'm sorry to ask you these questions but they really take my head and keep me from enjoy. Thank you for your attention to my request.
09.08.2016
Changes of symptomes via antibiotics
Hello, I take for one week ciprofloxacin and cefuroxim due to a worsening of the cough and increased inflammation values. Now it is like this, that the cough has gotten much better, also I have no problems with breathing, however there are still quite viscous secretions present. Furthermore I have sometimes a feeling of tension in the thorax and partly back pain. Also headache sometimes and a slight feeling of dizziness in the head when turning around. I have taken both antibiotics already several times and had always the impression, not to tolerate ciprofloxacin well. Can it be that the drug causes a worsening of the situation? Can I still wait some days or should I better go immediatley in a hospital?
05.08.2016
Result of sputum investigation
Today I got the result of my sputum investigation. For 6 months, I have not taken any antibiotics, either orally nor inhalative or i.v.. In spite of this it is written there, that antibacterial inhibitory substances were present. How can this be?
05.08.2016
Pregnancy and CF
Hello, I have an urgent question. I am 26-years-old and weigh 54kg. I only inhale with hypertonic saline 6% 2-3 times a day and use salbutamol spray 2 times a day. Additionally, I take Kreon. I got pregnant with the permission of my CF physician via in-vitro fertilization. My lung function was around 67% before pregnancy and I am doing quite fine. I used to run on the running belt 4-5 km 4-5 times a week. Now I have the problem, that I was not allowed to run in the first 3 months of pregnancy as I had bleedings during pregnancy, that came however only from the opening of the cervix. Therefore I do not run for the last 6 weeks and therefore I have now more mucus and I am afraid that the lung function is worsening due to this. I have already talked to my physiotherapist about this and she is of the opinion, that this would not be a problem and that I could improve lung function after birth via intensifying therapy. I urgently need advice how I can keep fit in spite of this respectively keep the lung function up. When inhaling hypertonic saline I use the flutter and a cornet, nothing else. I ask for a quick answer, many thanks.
05.08.2016
Symptoms in case of CF carriers
Dear experts, My nephew is suffering from CF. I myself have not been tested, if I am a carrier. Two years ago, I had the accidental finding of an IPMN (intraductal papillary mucinous neoplasia) in the pancreas. These had been removed via a Whipple operation. At the control investigation, now again a widening of the pancreatic duct has been found and another operation is in discussion. Can it be that I am a carrier for CF and therefore cysts are forming in my pancreas, that secrete mucus? Are these cysts the same as IPMNs (concerning the danger, that they turn to be malignant)? Many thanks for the information, B.
05.08.2016
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