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Topics
- Pulmonary arterial hypertension
- Hello, What are the consequences of pulmonary arterial hypertension (PAH) in patients with cystic fibrosis? When does it occur? Is there an increased risk of mortality? Otherwise, are sports to be banned?
- 27.02.2012
- Malaria prophylaxis
- Dear expert team! In autumn 2012 I would like to travel to Namibia. While planning the trip I came across the hint several times that preventive health precautions have to be taken necessarily with regards to malaria prophylaxis, especially when travelling to the North (e.g. Etosha pan). I have been travelling a lot and also far away but up to date a malaria prophylaxis has not been necessary for the travel destination. My questions: How does malaria prophylaxis agree with the other CF specific medication, especially with antibiotics? Which prophylaxis is recommended? Which rescue medication should be part of the travel luggage? Or should I better find another travel destination? Many thanks!
- 27.02.2012
- Hearing loss with Tobi® inhalation
- Dear expert team, about a week ago, I (26 years old, CF) had acute hearing loss. During its treatment phase, several hearing tests were done. My hearing loss was reversible, but it was detected in this context that I suffer from hearing loss in the high-frequency range. I have been inhaling once a day with Tobi® (tobramycin) for many years (perhaps even since its approval), though I have only had one i.v. therapy with tobramycin and gentamicin so far (6 years ago). Through my job as a pharmacist, I immediately thought of Tobi®. Also, according to the product specifications for Tobi®, hearing loss can be one potential side effect of inhalation, initially in the high-frequency range. There is hardly any information on the issue of hearing loss with Tobi® inhalation. However, I would not like to either become deaf over time or get Pseudomonas. I would now like to have my tobramycin level checked after an inhalation. When is the peak level reached, and is there a certain tobramycin level at all that has been proven to cause hearing loss with daily inhalation? Kind regards and many thanks for your effort.
- 27.02.2012
- Cystic fibrosis and estrogen
- My doctor suggested I take an oral contraceptive containing estrogen and progesterone to treat a rebel acne. Is it contraindicated to take estrogen and progesterone whith cystic fibrosis? Is there an increased risk of diabetes? Thank you
- 27.02.2012
- distal intestinal obstruction
- My mother has had a diarrhea and subsequently a sub occlusion. She is now very tired. Is it a frequent event ?
- 27.02.2012
- CF care in Guadeloupe
- Hello, We leave next summer for Guadeloupe for three years. Do you have advices on the care pathway that we will have to prepare ? Physicians, pulmonologists, physiotherapist
- 27.02.2012
- Vaccine against acute bronchiolitis
- Hello. My daughter monthly receives vaccine against bronchiolitis. Why some CF centres recommend this treatment and others don’t? Sincerely.
- 27.02.2012
- ADEK and vitamins for pancreatic sufficient patients
- Pancreatic sufficient patients with CF should take ADEK and vitamins suppliments? My baby has deltaF508 and R1070W and is almost healthy (details are in a previous question). Thank you.
- 27.02.2012
- VX770 - Kalydeco
- The child in question has G551 and F508 Delta mutations. For us VX770 provides great hope and just pray soon such a drug will be available to all other CF patients. I have read as much as possible on this drug but do not see information that I would wish to know. As a person with one faulty gene does not have CF then if VX770 considerably helps the G551 does this mean the quality of life will be so vastly improved that it makes the second gene, in this case F508 Delta irrelevant? Also does VX770 only improve lung function or also help pancreas insufficiency? If the drug works as well as expected would you presume daily 'physio would lessen? I look forward to your answer as I submitted a similar question awhile back but did not receive a reply so unsure if it actually reached. Thank you.
- 27.02.2012
- CF Centre in Mallorca
- Is there a specialised CF centre for children in Mallorca?
- 27.02.2012
