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Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
- allergy
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Topics
- nasal polyps
- What about nose polyps and CF?? My 8 year old son has nasal polyps. He had surgery 3 times but these polyps grow back every time
- 13.11.2008
- Preschool (Kindergarten)
- What do I have to take into account as the leader of a preschool (Kindergarten) when I am planning to host a child suffering from CF in my instituion?
- 13.11.2008
- Therapy
- I've got a few questions: My daughter is 12 years old, diagnosed with CF at 4 months of age. She's got isolated from sputum bacteria P. aeruginosa for 2 years and a half. Since then she's been ill more often and was treated by IV antibiotics (5 hospital stays from June 2007 till June 2008 In between the hospitalizations she was on oral antibiotics also), to clear the lungs infection. A month ago they found in spitum the bacteria - Acinetobacter. Is it good to try therapy by Colistin inhalatory antibiotic? What is the standard protocol for it? What is the treatment protocol with both inhalatory antibiotics - Colistin and и Tobi 300mg/5ml (tobramycin)? Is it better to take them both? Or shall we switch between them and in what time with what pause? What follow-up tests must be run to see the effect? We haven't tried yet none of these two antibiotics. Thank you! Wish you health and luck! Svetlana Atanasova - Bulgarian email: atanasova.1972@abv.bg ; SKYPE: kreizi1972
- 10.11.2008
- Blood Cough (haemoptysis)
- How often is the case that a CF patient dies of blood cough? For how serious it has to be taken if one has only 1-2 tablespoons of blood cough per month? Does one have to list oneself because of this even when the other results are still within the scope (FEV1 up to 40%, 02 97%)? Many thanks.
- 10.11.2008
- Mycobacterium abscessus
- Can patients with Mycobacterium abscessus colonisation be transplanted ?
- 10.11.2008
- camper van
- Hello, we have just bought a camper van and are planning to travel with our two kids, which both have CF disease, during summer holiday. Are there any concerns/recommendations we should think about ?
- 10.11.2008
- Lung-transplantation centers
- Dear ladies and gentlemen, as in the near future I will have to reconcile with the idea of a lung transplantation (LTx), the question of "where?" is coming up. On the one hand one aspect is being near ones home, on the other hand the expectations on a life as long as possible afterwards are of course of greater importance. Hannover (Germany) for example, points out again and again a delightful 10-year-survining-rate of around 50% for double lung tranplantation (DLTx), which is more the 5-year-surviving-rate in other centers and in the ISHLT-register. On the other hand, the selection of patients is different from center to center. I just have communicated with a woman, who had been graded in Munich to be too good for a LTx, while in Hannover, however, she has been listed right away HU (high urgency?) due to frequent exacerbations. Can you assume in Germany, that in case of a similar health status before LTx the chances at different centers are similar, or is the treatment, respectively the success critically different? Yours sincerely and thank you for the answer,
- 10.11.2008
- Costs of Drugs in connection with adult patients (Germany)?
- Please notify that the question/answer is made for a German patient asking about the German medical system!: My foster daughter has CF and just became 18. Now a pharmacist tells me that health insurance companies do not pay any longer for drugs like Vitamin E and Ambroxol (Ambrohexal) mucus solvent. Is that correct indeed? If yes, is there any possibility to take action against that decision? She has no income of her own at all and will never be able to pay herself for the mucus solvents which are vitally important for her.
- 10.11.2008
- ABPA therapy - alternatives to cortisone
- In case of ABPA (allergic bronchopulmonary aspergillosis): are there any alternative therapies to cortisone? If there is no other possibility, what do I have to pay attention to in case of my daughter ( 9 1/2 years)? Many thanks for your help, Yours sincerely,
- 10.11.2008
- Mould in the appartment
- One week ago, I discovered mould at the wall of the appartment. In the room of my daughter. The house management treated it superficially and the wall was repapered. My daughter suffers for months of a sore throat in the morning and often of pain in the joints. We have often been to the doctor, however, he could not find anything. Question 1: Can the sore throat and the pain in the joints be caused by the mould? My son, living in the room next to my daughter suffers from CF. Question 2: Is is sufficient to treat the mould on the wall superficially and to repaper the wall? Are the mould spores eliminated completely by this and can not do any harm to the children? I have been told several times that the mould will come again, as soon as it will get cold and humid again. When is the mould going to be harmful? Only if it is visible as black at the wall or before that? Sorry, these are more questions, but this is very important to me. I am considering leaving the appartment. Many thanks for your efforts, Yours sincerely, a concerned mother.
- 10.11.2008
