Topics

Nasal shower after all rather harmful?
Hello, as I have again and again problems with the sinuses it would interest me, if nasal shower in CF is going on to be recommended? My general practitioner said to me that more actual studies have shown a rather negative effect, as via a nasal shower supposedly germs are flushed increasingly into the sinuses. How is the actual recommendation, now? A furhter question: does isotonic sea salt nasal spray dry out indeed the mucosa? My general practitioner dehorted my also of that. Many thanks for you answers.
23.04.2010
Two CF children in same class
Hello, Our son (7 years old, CF) and another girl with CF are in the same class. With regards to social aspects we do find this positive. However, her health condition has now deteriorated (transplantation is planned). Since four weeks she is Pseudomonas positive and a therapy with antibiotics did not succeed. We know about this diagnosis since two days. Which measures (e.g. hygiene) are recommended? Our son hardly has any lung problems. Do we have to expect an infection even though the lung is in a good condition. Many thanks
23.04.2010
Doubts about cystic fibrosis
My son is 5 years old. Since September 2009 he coughs continuously, his stools smell foul. Should I be worried?
21.04.2010
FEV 1
Dear experts, at measuring of the lung function of my 9-year-old daughter (CF) there are mentioned 2 FEV1-values. FEV1, measured in D%(actual1/desired) as 26.8 and FEV1% VC MAX, measured in D%(actual1/desired) as 20.9. Which of the two values corresponds to the "classical" FEV1-value, that means to wich value I can be orientented towards? Thanks and greetings
21.04.2010
Nutrition via port
Dear expert team, I am 21 years old and weigh about 38 kilogramms. Not enough! For this reason my physician wants me to agree on a PEG (percutaneous endoscopic gatrostomy). However this is not in my interest. Since September 2009 I have a port, as I need an iv-therapy more and more often; I am very content with the port. Of course I would like to do something against my underweight, as I am doing worse and worse. For example I know, that a nutrition is possible via a port, done for example in cancer patients. I talked with my physician about this. But he denied it with the argumentation of a contraindication due to the liver in CF, because of the ingredients of an additional nutrition. Now my question: Is a nutrtion via a port possible in patients with CF? For example because of another composition of the nutrition so that it does not hurt the liver? I thank you in advance for the effort and the answering of my question! Yours sincerely,
21.04.2010
Mutations, do I have CF now?
Dear expert team, could you please explain the following mutations to me? Result and interpretation: I have in the exon 21 of the CFTR gene the mutation p.Asn1303lle (c.3908A>T, traditional writing 4040A>T) heterozygously. The clinical meaning of this change is not clearly described. Furthermore, I am a heterzygous carrier of the TG 12-5T-allele in the CFTR gene. Patients with a 5T-allele and 12 TG-repeats in the neighbourhood of it, have, according to Groman et. al (2004), in combination with a second recessive mutation a risk of getting the illness of 78%. The diagnostical meaning of these changes should be judged in combination with the clinical data. This mutation leads to an incorporation of the aminoacid Isoleucin instead of Asparagin at the position 1303(p.Asn1303lle) and has been described by Ferec et al (cystic Fibrosis Consortium Newsletter 66, 1995) in a Frech CF patient together with a second heterozygous mutation on the other allele. According to Claustres et al., 2000, the clinical impact remains unclear, as this mutation has been found in patients with a typical CF as well as in patients with a mild or gential form of CF. The in the intron 8 observed 5-T-allele is juged as a splice mutation and has already been described as illness causing in the literature in the context of a mild or gential form of CF. In intron 8 the 5T/7T-allele is heterozygous. The direct analysis of the genotype includes the most frequent mutations in mid-Europe in the CFTR gene and covers therefore about 97% of genetic changes in patients with CF: What happens when the aminoacid Isoleucin is incorporated? Is this a real CF? A mild form? I would be pleased if you could comment on this topic. Thank you
21.04.2010
Stones in the liver II
Dear Prof. Dr. Bargon! Many thanks for your extended answer. Only 2 things are not clear to me: 1. The by you mentioned drug "ursodeoxycolic acid" should only be used with a totally intact gall bladder. Mine has been taken away however in 1999. 2. Is it possible - as far as I am allowed to take the drug in spite of the missing gall-bladder - to get it in a synthetic form on the market? I would rather die than to contribute to the torture of the black bears! Many thanks again for your efforts with me.
21.04.2010
Stones in the liver
Dear expert team, 1999 my gall-bladder has been removed. Otherwise my liver was ok. From 1999 to 2001 I got very high cortisone dosages (up to 60 mg), as a ulcerative colitis was suspected. 2001 I had an operation, in which 25 cm of the large bowel were removed. It was not an ulcerative colitis. In spite of this I have to go on taking cortisone (inhale), as I have a chronic bronchitis. Here in Spain, my CF is not taken into account, as it is the "healthy varaint". Last year I have again been operated on the liver, as it was full of stones and the bile duct did not let them pass. The bile duct had been removed and replaced by my own tissue. As furthermore a strong fat liver has been diagnosed, I am feared now. Is it possible that my liver gets full of stones and hereby gets destroyed? I do not drink and do not eat fatty food. Thank you for your patience.
21.04.2010
Eradication of Pseudomonas - new therapy
Hello, after 1 year I again became a PsA, otherwise I have only Staphylococcus. My doctor read about a new therapy for the eradication of PsA, I want to know if you also have success with that. I get 500mg tablets Ciprofloxacin, Azithromycin tablets and tobramycin to inhale for 3 weeks. Before, I did never take Azithromycin - macrolide antibiotics in addition. Does this therapy promises success? Many thanks for your answer
20.04.2010
CF: Mutation of chloride channel?
Dear Sir or Madam, During a test in the subject „clinical pharmacy“ the following statement was made: “In CF there is a mutation of the chloride channel.” One should consider if this statement is correct. In my opinion it is wrong (...). What do you think? Best regards M. K.
16.04.2010
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