My daughter (15-years-old) is colonized with Staph. for at least 2 years. Now, 4 months ago, an infection with Acinetobacter baumanii (multiresistant MRGN 3) and lately an infection with Haemophilus influenzae occurred additionally. Her FEV1 value lost 35% in 3 months. Now Acinetobacter is not ...
Hydrogen peroxide
I have read, that 0.3% hydrogen peroxide could be helpful if used with a nebulizer in case of lung diseases. Furthermore it says that i.v. treatments in case of COPD/emphysema can stop the progress of the illness and partly even improve it. Are there any experiences in connection to CF? I could ...
Worsening of the prognosis because of Pseudomonas?
Hello, what is the actual guidelinde in case of chronic colonizsation with Pseudomonas? Which role do the Pseudomonas antibodies play? Is it still like this that a chronic infection with Pseudomonas, that is treated according to the acutal guidelines, leads to a worsening of the prognosis/lung ...
Production of mucus after transplantation
I, male, 50-years-old, have undergone sucessfully a double-lung transplantation in October 2013 with the diagnosis of COPD of unclear origin. Both sweat tests that have been performed 25 years ago, had been positive, the genetic investigation of the blood on the 15 most important CF-mutations ...
Pancreatic Insufficiency
Hello, My 14 months old CF daughter was diagnosed one month after her birth: DF508 and G3272-26A mutations. After her birth, she was 237 for fecal elastase, which means she was "pancreatic sufficient." In her annual report last month (14 months old), the fecal elastase showed a rate of 167. ...
Mucomyst® [n-acetylcysteine]
Hello, Some CF centers prescribe Mucomyst® (n-acetylcysteine), others not at all. There seems to be a reserve by some doctors about this drug still effective to thin the mucus. I want to know why. Thank you
Long-term recording of lung sounds
Dear expert team, is there the possibility to record for a longer period of time (the night) the sounds of the lung and the cough etc. by a device (LEOSound). Can that be helpful in case of CF, e.g. for the diagnosis or for the control of the sucess of the therapy/ course of the therapy? Many ...
Effects of cigarette smoke in the sleeping room
Hello, my partner is smoking in the sleeping room. When I am there (I suffer from CF), he smokes out of the window. We are not living together yet. However I have the impression, to cough more there during the night compared to my home. Besides the reduced sleeping comfort, can this have ...
Respiratory signs
Hello, My one year old CF baby has important digestive symptoms but no respiratory signs, even having had nasopharyngitis, I have not seen significant differences compared to another baby. Do you think the respiratory involvement will be limited or it will appear in the forthcoming years?
Testing of baby when CF is diagnosed
Dear experts, My daughter (11 weeks old), was born on the 5th May 2015 with an intestinal obstruction. After three weeks the result of the genetic testing arrived: positive (cystic fibrosis). The CF center decided it was necessary to take Kreon© (pancreatin) for kids and to inhale solution of ...
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