Topics

F508del/R117H sweat test negative
Dear ladies and gentlemen, I am 33 years old. As symptoms I have only a slight “mucus feeling” in the throat, that goes away when clearing the voice. I have had a sweat test done a few days ago and had other values checked. The result of the sweat test was 19 mmol/l. Therefore truely negative. Also the other values were like from a healthy person. A lung CT will be done in the future due to the “mucus feeling” (I am still breast feeding at the moment). I am very glad of course, however I am a bit skeptical. The second mutation is there, indeed. Can it be nevertheless, that a CFTR caused defect is underlying? Could the sweat test be possibly false negative? Should it be repeated for being secure or other diagnostics should be done? In my CF center they said “definitely healthy” and the lung CT is done for the final security. Best regards,
17.07.2017
NIV (non-invasive ventilation) weaning?
Hello, I am 38 years old and CF patient. Since a severe pneumonia I sleep for two months with a NIV (non-invasive ventilation) device. Now I tried the day before yesterday to sleep without NIV. This was quite ok. However since yesterday evening and today, my breathing got worse. Oxygen saturation is good, however breathing is hard and lung function at the center today was deteriorated. Now I thought, if my lung could probably have been over-stressed because of the night without NIV and now has a kind of muscle ache and has to recover first. Could that be possible? Is there any advice for weaning from the NIV? Regards,
17.07.2017
Pseudomonas Vaccine
Could you give me some news regarding a vaccine against Pseudomonas. A clinical trial was ongoing and had to end on 2015 (I read this on a posted question)
03.07.2017
Soap
I'm a CF woman. Can I use soap bars, and if so, can we use those handmade, or are there restrictions (for reasons of hygiene, stability of the product ... in the products chosen?
03.07.2017
Visit Tropical Greenhouse Zoo
Hello, Our family will soon be visiting the Beauval Zoo. We wonder if it's possible for our 3-year-old CF son to visit the greenhouses to see the crocodiles and the other tropical animals. The greenhouses look great and there is an air filtration system, but this remains a very humid environment. What do you think ? Would you let your CF child go or is the risk too high? Could putting a mask the time to cross the greenhouses help? Thanks a lot for your help !
26.06.2017
Toys
My daughter puts all her toys in the mouth: how to clean them?
26.06.2017
Benefits of not visiting a public school
My 5-year-old CF daughter (delta f 508) has never been educated in a public school for a personal choice. She has many contacts despite all (sports and family environment)... Never been hospitalized, never had an IV antibiotic treatment... Do you believe it's due to non-schooling? Thank you
26.06.2017
Handwashing
I have a 3-month-old CF child. I try to educate his 2 year old brother in handwashing but it's not easy Could help me?
20.06.2017
Food supplement Indeptra from USA
What do you think of this offer? The non-profit-CF research group Sharktank (https://sharktank.org) sells under www.planetarybiosciences.com the food supplement "Indeptra". Indeptra is a natural composition for CF containing polyphenoles and antioxidants. These polyphenoles have reduced demonstrably inflammation in the laboratory and in human beings and/or acitvated the CFTR function. 270 tablets (that are sufficient for one months when taking the recommended 3x 3 tablets daily) are sold in the USA for 49 Dollars. As it is not a drug, the insurance will not cover it. Due to the duty law it is recommendable to import Indeptra via a pharmacy in the USA. An effect can be expected probably only after several months of intake. Single patients report however short-dated increased cough or astonishing improvements ("I have never coughed as much since now, however not as if I was ill: here clots are coming out"). Due to a lack of financial support there are however no studies, that prove the efficacy of the mixture. The tablets contain curcumin, resveratrol (a polyphenole) and piperin (from black pepper), a combination, for that CF patients report positive effects. Further polyphenoles (naringin and quercetin, crataegus) should increase the CFTR activity and the frequency of the beat of the ciliae. Silmarin from the Marian thistle has anti-fibrotic effects and protects from inflammation. Further ingredients are anti-oxidants like epigallocatechingallat (EGCG) from green tea and 7 and alpha-liponacid. Finally amentoflavone and forskolin should increase the signal molecule cAMP in the cell and protect against damage, in order to improve the CFTR- activity. With eating Indian food, green tea and much vegetables and fruit one could take these substabces all isolatedly so that dangerous side effects cannot be expected. Natural Compounds as Therapeutic Agents in the Treatment of Cystic Fibrosis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4828912/ Evidence against resveratrol as a viable therapy for the rescue of defective ΔF508 CFTR https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4587346/ Thank you for your answer! Stephan Kruip for the magazin of the German patient organization muko.info
20.06.2017
Cleaning of the gut before endoscopy
Hello, I am lung-transplanted since 2010 and had a routine appointment for a gut endoscopy last november. The cleaning phase was unfortunately very difficult, as in spite of drinking of 3 litres endofalk-solution (macrogol) the day before, persisting hard pieces of stool could still be found on parts of the bowel wall. Therefore a final statement could not be made, therefore another attempt was done in December. This time the cleaning phase was intensified. I was told to stop eating two days before and started at 10 o'clock in the mornings with prepacol 70 ml; at 12 o'clock then the tablets that go along with it and at 16 o'clock 3 litres of moviprep solution. On the day of the endoscopy again at 6 o'clock 1 litre moviprep solution. The result was a bit better, however not yet satisfying. As at the end of April a new attempt should be done and I have since the endoscopy again and again flatulences (probably as an intolerance with longtime effect of the whole gut to endofalk, moviprep or prepacol) my question: Are there any other substances, with that the cleaning phase could be done better? And what can a transplanted patient take in order to support the gastrointestinal tract? Many thanks in advance! Best regards,
20.06.2017
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