ecorn-cf: App. question list

Enter your username and password here in order to log in on the website:

Topics

Weight after operation: Dear expert team, the question about gaining weight after lung transplantation, I find it very interesting. Could it also be that after the operation the energy turnover increased? I have a similar problem. I had an operation of the abdomen (appendix), a bit more complicated, the operation took several hours. Since then I lost weight, nearly 1 kg every week. From yesterday to today I again lost 500g in spite of the fact that I eat all the time and take creon in high dosage. Here is my food from yesterday: 500 g white cheese 500 g youghurt 3.7% fat much fruit (apples, pears, mango, bananas) 6 pieces of cake (2x cream cake, 2 x nougat cake, 2 x cake with pudding) salad with 400g meat and dressing 3 eggs as stirred egg and fat to fry 300g cheese, 400g peas and a bottle of juice and half a bottle of milk. Many thanks for your answer; 18.04.2011

Bronchiectasis, bleeding: Hello, I suffer from CF and also have bonchiectasis. I am 22 years old. I recently had an infection. I also have Pseudomonas aerugionsa. From the 10th january to the 23rd february I took antibiotics. During this time I coughed up also bood sometimes. Therefore I took for 8 days Dicynon® (Etamsylate) intravenously, after that orally 2 weeks Peflavit C® (Hypericum perforatum L.). I am at home for 3 days now. I feel really good, I only hardly cough. There are no hints at an infection. Nevertheless I have blood in the sputum. I take now Dicynon®(Etamsylate) orally for 3 days according to the opinion of the doctor. He can not explain why I bleed sometimes for one months now, in spite of the fact that I have taken those drugs???; 15.04.2011

Klebsiella pneumoniae: My son is 7 month old now. The diagnosis has been made in November 2010 after a really severe phase with atelectasis and pneumonia. After that and until now he is doing obviously fine and he is even overweight. Since then we gave him prophylactically ampicillin and sulbactam. At the end of january Klebsiella bacteria have been found and the antibiotic has been changed to cefuroxim. Today the actual swab showed, that the Klebsiella bacteria have not been deminished, however even multiplied and 2 stems have been detected. Our center is of the opinion, that those germs are not "illness-relevant" but however they do insist on the antibiotic therapy. This was the sole information and my questions to the members of the center were obviously unwanted. It is very contradictory. According to the antibiogram, the germs should be sensitive to ampicillin and sulbactam as well as to cefuroxim, however the swab proves otherwise. The multiplication of those facultatively pathogenic germs is after all expected to make a pneumonia again more possible in case of further multiplication (alone due to the ammonia), especially if a virus joins in or the immune system is weakened due to the ongoning antibiotic therapy? Does one assume that those germs are not in the lungs and if yes, on what is that based on? Can one treat complementarily with Ribomunyl®? Many thanks in advance; 14.04.2011

NB-401: I vaguely heard of NB-401. It is an aerosol that would combat bacterial strains highly resistant to current treatments. Could you tell me a little more? ongoing studies? Thanks a lot for your response; 12.04.2011

VX-661, for patient with the F508del mutation: Regarding the phase II study of VX-661, for patient with the F508del mutation (deltaF508), which should begin during the second semester 2011: - Is it the same study than the one where VX-770 is used in combination with VX-809? Or is it a different study? - Is study is also specific for patients homozygous F508del? - Is there a website to know the inclusion criteria? Thanks for your response; 12.04.2011

Miglustat and VX-809: Hello, What are the news regarding Miglustat ...Are you aware of new trials ? On the other hand, when will the results of the study on VX-809 be availbale ?; 12.04.2011

Demolition of a house / asbestos: Dear expert team, we have a 7-year-old son with CF. The direct neighbouring house from the 60ties, that is according to the statment of the neighbour himself very much asbestos-containing, should be demolished soon and a new house should be build. I know that the materials are disposed separately, but however I fear the demolition and I fear the dangers for my son. What could we do in order to protect him despite keeping him away there? Thanks for an answer!; 12.04.2011

Portable Bipap devices with storage battery: Hello, are portable Bipap-devices available with storage battery in order that the patient can be more mobile (move more freely, also outside)? Where has the patient address to for information? Have the devices to be adjusted individually?; 12.04.2011

Pulmozyme® (DNAse) and anaesthetic gas: Dear expert team, are there any hints that Pulmozyme® (DNAse) could have a converse effect in case of an anaesthesia (with gas), that is that the anaesthesia does not function properly in that case? If yes, how long before one should stop DNAse? Many thanks for your answer; 12.04.2011

Weight gain after lung transplantation: Dear expert team, I am in the meantime a CF patient who has been double-lung transplanted for one year now at the age of 24 years. I am doing very well. However I have a problem in gaining weight since the lung-Tx operation. I am 176cm tall and weigh 53kg. Daily calory intake about 3000 - 5000 calories. As I am also doing sports and strength training, this weight is much to low for me. The following steps have already been tested and done: -diverse talks with dieticians did not lead to success. (Scalshake, Fortimel etc...) - diabetes? Oral glucose tolerance testing and blood count in normal range - Creon forte 40.000 increased--> no success (also before the operation no Creon was needed) - thyroid function in the normal range - talk with the physician in charge--> immuosuppresive drugs have no influence on the weight gain As you can see I am a bit helpless and hope on an answer from you; 12.04.2011