Topics

Malnutrition and cystic fibrosis
I am a 45 year-old adult with cystic fibrosis since birth. My weight has always fluctuated between 39 and 42 kg since my teens. Since 1993 I am diabetic and treated with insulin; I have been losing weight for 2 years. With bags of Clinomel® [parenteral feeding soultion] for 1 year, I have gained weight (39 kgs) but I have been offered gastrostomy, which should be more efficient, because I lose weight again. What is gastrostomy? Thank you in advance for your time.
20.10.2014
Hypertonic saline solution
Why is hypertonic saline soultion not used prophylactically from the youngest age on, for degradation of the mucus? Apparently, it is effective for the airways of infants.
20.10.2014
Candida albicans and Aspergillus
Hello, I would like to ask you, how you judge the result of our daughter. Our daughter is nearly 5 years old. At the age of 4 months, she has been diagnosed to suffer from CF. She is doing well and we are very well cared for in our CF center. Until now, throat swabs showed mostly Staph. aureus. Newly occurred now for the firs time Candia and Aspergillus. Our CF center does not recommend a therapy at the moment, as she is doing well. How do you judge this? What can we do? Would you recommend a respective therapy? Many thanks for your answer.
20.10.2014
Burden with germs
Dear ECORN team, I would have a rather uncommon question. I am writing a seminar paper on the topic "problematic germs in case of CF" and would like to write something about the occurrence on a percentage basis of three different germs. It deals with the following germs: Pseudomonas aeruginosa MRSA Burkholderia cepacia I know that the Pseudomonas does not belong to the group of "problematic germs" in spite of this it can be found frequently in the lungs and ist not always unproblematic. In case you should have the time to answer this question, I would be very glad. Regards,
20.10.2014
Prognosis of mutation classes
Dear experts, I am always told that the prognosis for CF patients can never be predicted, that it is very different from patient to patient. It would depend on the genes and also on other factors. This is what I know - but as a parent of a CF child one is of course tortured by the insecurity if one will life longer than the own child. Would you please give your opinion in how far mutation classes are responsible for the severity of the disease? Concrete: is a patient with 2 class I mutations going to die earlier as a patient with 2 less severe mutations, e.g. class III mutations? If a CF patient is extremely pancreatic insufficient, does this worsen his prognosis even if he has normal weight due to a high enzyme replacement therapy? Many thanks for your expertise!
20.10.2014
4MRGN and regular i.v. therapie
Hello, for about one and a half years besides a "normal" Pseudomonas aeruginosa also a 4MRGN is detected in my sputum. According to the lab, it is though still sensible to 1 or 2 antbiotics. My question is now, if regular i.v. therapies (like they are desired by the treating physician) make sense in this case or if one creates a complete resistance by this. Shortly data about my person: I am 21 years old and have always been in a good general health condition. However, in autumn last year, the middle lobe has been removed due to constant inflammation, that caused problems in the two preceding years. The FEV1 value is actually at 60% and did not change in comparison to the time before the operation. Since the operation, I did not have an infection, pneumonia or others and I visit the fitness studio 2-3 times a week. Best regards,
20.10.2014
Compassionate use - VX809
Hello, I turn to you with a question concerning VX-809. Vertex reported at the presentation of data (Phase 3 Ivacaftor / Lumacaftor from June 24th, 2014) about a "compassionate use" program [comment of the translator: a compassionate use program describes the tolerated usage of a drug that is not licensed for humanitarian reasons]. These do indeed start, when the request for licensing is sent to the FDA or EMA. This should be done in a timely manner (3/4 of this year). Do you have any more precise information about this? How can one take part in such a program? To whom should one address to? In my center they say, that we as patients will get the drug after market authorization. To myself: female, 28, vems 35% (after i.v. every 3 months).
13.10.2014
Can the diagnose change?
Hello, in the year 2008, two sweat tests of my at that time 5-year-old daughter were 59 and 78. After this, there were two further sweat tests at a university hospital with the values 26 and 12. The measurement of the elastase in the stool was 638 and 629 as double measurement. Therefore the result was "negative" concerning the illness CF. Actually she is ill for already 4 weeks and the antibiotic, the mucolytic and inhaling do not bring any relief. Now my question: can the diagnosis "CF" be positive now?
13.10.2014
Detection of fungi in the throat swab
Dear expert team, our daughter suffers from CF and is now nearly 5 years old. She is doing well and the doctors are very content. The last throat swab detected now Aspergillus and Candida. Looking in the past, she has otherwise mostly Staph. aureus in the swab. As she is doing well, we do not have to do anything concerning this result. What would you recommend? Should we, if necessary, nevertheless start a therapy? Where could she have the germ from? What effect do the fungi have? Many thanks for your answer.
13.10.2014
Autodrainage
Hello, I have a 17 year-old CF child and her pneumologist warns us about her lack of independance for chest physiotherapy at her age. What age do you recommend to learn to do chest physiotherapy alone to be more independent during holidays and as a support to daily sessions? Thank you
13.10.2014
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