Topics

Hygiene of Pseudomonas
Taps and Pseudomonas
12.12.2007
Dealing with dogs / pets
Without doubt this is a frequently asked question, however I am not sure about this: is it advisable to avoid dealing with dogs? Which kind of pets are advisable for CF-patients anyhow?
12.12.2007
Sweat test
Hello, a sweat test has been done to my daughter. The result was 61 borderline. What does that mean?
07.12.2007
Factor V-deficiency
Dear CF-team, My doctor in charge said once to me that I had a factor V-deficiency…can somebody explain to me what that means, it must have something to do with the blood….Do I have blood that is to thin or to thick? I would be happy to get a more detailed explanation from you. Yours sincerely,
07.12.2007
Gene mutation of delta F 508/2789+5G-A, Work in a pigsty
Dear expert team, I am 37 years old, male and I am suffering of a very mild variant of CF. I have the mutations F 508 and 2789+5G-A. My brother died as a child because of CF. Can you give me some information about my mutations? Is it possible that my health condition will worsen sometime? Now I have another question: in the last time I have been visiting a friend frequently and we were in his pigsty, where the strong smell caused light pain in my lungs. Is it advisable for me to avoid stables in general? Many thanks in advance, Yours sincerely
26.11.2007
New type of cough
My daughter (4 years old, CF) received an antibiotic therapy (cephalosporine) 6 weeks ago because of a severe cold (rhinitis). The rhinitis disappeared after the therapy. A severe, strongly mucous cough, coming from the deeper airways, however, did not disappear, even after a second course of antibiotics had been given. After she has coughed out the mucous, her situation becomes the same as before coughing within a few minutes and she is hardly able to breathe-especially at night. She did not have such a kind of cough before. During an investigation at the paediatrician the lung sounded normal 3 weeks ago. What can be the cause of this cough? Thank you very much and best regards,
26.11.2007
CF in adults
Is it possible to get CF as an adult? Our twins have been diagnosed with a protein-S deficiency and 4G/4G polymorphism in the prothrombin gene. My husband has the protein-S deficiency, but the 4G/4G has not been tested. For one year now he suffers from mucous sputum with continuous cough and shortness of breath. An allergy test and a CT-scan did not reveal any new findings. He is thought to belong to the rare cases of patients whose illness can not be explained. His grandfather died 1964 of TB, he however is born in 1965. At the moment he takes Tiotropiumbromid for medication.
26.11.2007
Prescription/Repair of Pari-Nebulizer
My daughter has been inhaling for 4 years now with the Pari-Master nebulizer, which did suddenly not work anymore during an inhalation (probably the motor is broken). Therefore I wanted to get the nebulizer repaired, I got a prescription for the repair and brought the nebulizer to the pharmacy. Today, I got a phone call back from the pharmacy that the health insurance (IKK) as a general rule does not pay any repairs anymore, but only prescriptions for new nebulizers up to an amount of 154,91 Euro. The price of the Pari-Master nebulizer, however, is 455,83 Euro, will say that most of the amount has to be paid by us. As on the one hand it is not my fault to have a child suffering from CF and for that reason it is impossible for me to work more than I do at the moment and on the other hand my child needs the inhalation therapy urgently, I am thinking of taking action against the health insurance. In this case I see a discrimination of disabled people (the ones who are of good health do not need to inhale—we don’t do it for our pleasure). How do other families cope with that? Do all CF patients pay their nebulizers by themselves? Many thanks for your answer
22.11.2007
I am asking for help
(question in Slovak language). I am physiotherapy student and I decided to choose CF topic as my bachelor work and I want to ask for help with finding books on CF physiotherapy. Thanks a lot in advance.
16.11.2007
Oxygen therapy at night and after physical stress despite normal blood gases at rest
Hello, I am suffering from CF and I am now 41 years old. Unfortunately my lung function deteriorated rapidly in last years, particularly dramatic over the last six months (FEV 1 now only around the 41 % to 45%). At rest I have still a relatively good oxygen saturation (around 94%). However, under physical stress, I run very quickly out of power. I feel I would be better of with an oxygen concentrator at home, maybe I could recover from a physical stress by lying down and taking supplemental oxygen (2 litre/min.) for a few hours or also at night. In my case you cannot clearly decide for or against supplemental oxygen. I think, the health insurance company would reject to pay for an oxygen concentrator due to my good blood gases at rest, on the other hand my blood gases were never assessed under physical stress, which would certainly lead to different conclusions. Now my question: If the health insurance company rejects an oxygen concentrator, I would like to buy one privately (I know, thoses devices are expensive!). Is there any concern from the medical point of view to take supplemental oxygen (2 l/min) after physical stress or at work even with normal blood gases at rest? I also perceive intelectual work as very hard and would like to have an oxygen concentrator at work (in the office). I believe that with supplemental oxygen I would feel much better and could better cope with my daily affairs. Can I do any harm to my body with such an early start of an oxygen therapy? I would be happy for an answer to my questions. Many greetings and thanks.
07.11.2007
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