Topics

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
Blood in stool
Dear expert team, Since three days my son has blood in the stool. He stopped taking ACC® (Acetylcystein) and almost does not eat anything in order to relieve the bowel. Do you think this is necessary? Many thanks for your efforts.
16.04.2010
Anaemia
My son was diagnosed severe CF form from birth. A few times he was at ICU for ventilation. Now he is 1 year old, very active, his weight is 8,650 kg, but was some suspicion that he has anemia. We used some iron preparations (feroglobine) as well as apple or beetroot juice. How to treat anemia and crackles in the lungs?
15.04.2010
Eye cataract
Dear expert team, I would like to know if there are other cases where a CF patient also developped an eye cataract for whatever reason (cortisone, IV therapy, etc.). I am 19 years old and I have had both lenses removed within the last half year; I received artificial lenses because the cataract had worsened that much. Now I would like to know if there are other CF patients with the same experience. Best regards,
14.04.2010
Is a saline grotto beneficial for a CF child?
Dear experts, A saline grotto opened close to where we live [a link with further German information was given]. Our CF child (6) has problems with the upper airways, the nose is never completely clear despite inhalation with Pari Sinus and nasal wash (nasal polyps are not that big; an operation is not planned). So far, we have been to the grotto once and it was a very positive experience for our child; the nose was almost clear. Is visiting a saline grotto recommended in addition to the therapy and if yes, how often should a CF individual visit it to have a therapeutical effect?
14.04.2010
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