Topics

ABPA - Kombucha fungus
Hello, can self-made Kombucha (a beverage from tea and also the Kombucha fungus) at home be envetually a problem for a CF patient with ABPA (allergic bronchopulmonary aspergillosis) ? The fungus is only be covered in a glas with a slide of paper towel. Many thanks in advance.
30.04.2014
4th operation of the sinuses?
I face the question to have our son be operated at the sinuses for the 4th time. [Remark of the translator: I left out the name of a German hospital that was considered for the operation]
30.04.2014
Building a house
We would like to build a massive house made of wood. Does anything speak against a wooden house from the standpoint of CF? What about a ventilation system?
30.04.2014
Achromobacter and Colifin®
I am 48 years old. In November 2013, Achromobacter has for the first time be found in my sputum and also Pseudomonas, the latter for the third time (always with large year-intervals inbetween). My lung function value FEV1 was always in the range of 55-57%. Unfortunately, from February 2013 on, I had pertussis (whooping cough, detected by antibody titre). During the illness of pertussis, my lung function value decreased to 52%. At the same time as the finding of the germ, a lung function test had been performed in November, FEV1 value was 45%. Eradication trial with Ciprobay® (ciprofloxacin) 2 times a day for 30 days and inhalation of Colifin® (colistin) 2 million units 2 times a day now for more than 4 months. Result: Pseudmonas could not be detected after 30 days anymore, in all further sputum results it could not be detected either. Achromobacter still in the finding. Question 1: Shall I go on with inhalation of Colifin®? When inhaling, I have a marked dyspnea until 30 minutes after inhalation, I am spastically narrowed and have strong episodes of cough. My lung function did not improve under the therapy and as a side effect i.a. a worsening of the lung function is indeed mentioned. Furthermore I have increased blood in the sputum when coughing. Question 2: Can this be due to Colifin® or rather from the colonization with Achromobacter? Question 3: Shall I do an i.v. therapy, in case to get rid of Achromobacter in the end? Many thanks for your efforts in answering my questions.
30.04.2014
Klebsiella species in the bowel
How can I find out why Klebsiella species have multiplied so massively and unhealthily in my bowel? Mutaflor® helps, however I fear that after finishing the treatment without getting rid of the cause everythings starts again.
30.04.2014
Genotype F508del / G85E
Please, I would like to get general information about the phenotype associated with the mutations F508del and G85E. Thanks
30.04.2014
Mutation 2711delT
Hello, I would like to know more about the homozygous mutation 2711delT. Is it a mutation-stop, are there any other people known with this case? Thank you very much for your Response.
30.04.2014
False negative CF screening test
Can you explain how a negative CF screening test (at birth) can be a false negative ? Are such cases common? How can this happen? My son had this test done at birth, it was negative. After four months, and after many visits to the hospital, it turns out that he is suffering from cystic fibrosis.
29.04.2014
What evolution can be expected for CF diagnosed in adulthood?
Hello, I am a 28 year old woman and recently diagnosed with CF (sweat test: 114). I have got nasal polyposis since childhood, I had pneumonia at 24 years and an asthma attack (with bronchitis) at 26 years. Otherwise I'm pretty good. I do not particularly cough and I do not have specific digestive problems. So I guess having a milder form of the disease. However I would like to know if the disease is necessarily evolving and worsening or if I could stay in my current state all my life. Thank you very much.
29.04.2014
Variations of blood sugar values
Dear CF team, I have no proven diabetes in case of CF. The regularly performed OGTT (oral gulcose tolerance test) has been borderline for years, never unambiguously too high. The fasting blood sugar values are between 105 and 138. Insulin donation for the night has been discussed, however the topic was finished quite fast, after my doctor checked the daily variations in the protocol. Nearly continously they are between 60 and 220. Slip-up values around 40 are repeatedly among them. Then the nightly administration of insulin had been abandonned quickly, as the staff of the center feared a nightly hypoglycemia. With bananas and high-calory smoothies I go to sport. However even with this I do not come along very well, as the hypoglycemia gets me after 2 km of running. Do you have any idea for me, what else I could do? Do the high fasten blood sugar values cause damage? Many thanks for your efforts!
29.04.2014
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