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
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.
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.
Visit at the dentist
Dear expert-team, my son (13 years old and free of Pseudomonas aeruginosa) has to go regularly to the dentist because of his brace. Until now we tried to avoid sucktion, mist and drying with air. This is not always easy, especially at the prophylaxis visits. The dentist team is very helpful and wants to know if a sterilization installation, which seem to be produced esepcially for dentists, would allow to use air or water rinsing?
Are malignant degenerations in the gastrointestinal tract more frequent in patients with CF?
Dear expert team, I have the following question which might seem ridiculous to you but which has been on my mind a lot. Recently I have been reading in scientific literature about cystic fibrosis (a medical book), that in adult patients with CF who are above 40 years of age malignant degeneration of cells in the gastrointestinal tract (cancer of the large and small bowel) may be 6,5 times more frequent compared to healthy adults of the same age. In fact I did not detect any alarming sings (no abdominal pain, no blood in the stool) that could point to that (I am suffering from CF and I am older than 40 years). Nevertheless I am asking myself if it is true what is written there and if yes, if it would be advisable to do a rectoscopy, sigmoidoscopy or even a high colonoscopy once a year to CF patients older than 40 years, of course on a voluntary basis. I could provide you with the reference where I got this information from if needed. I am aware of the fact that me as a CF patient over 40 years of age, I have to reckon on other special problems (e.g. diabetes mellitus, pneumothorax, or bleeding of the lung-until now none of these problems occurred, however), but the statement concerning the possible higher risk of cancer in CF (what has not been proved, however) shocked me quite a bit. Did you ever hear anything about this? As already mentioned, even if there is no reason from the medical point of view that I should worry about this, this question has bee on my mind a lot. Yours sincerely, CF patient, 41 years old
Genetic therapy in Cystic Fibrosis
Dear expert-team, many people are talking about exchange of genes / genetic therapy. I would be interested in the latest research; what can be done by this method so far? Many greetings,
Normal kindergarten and nevertheless individual integration
Hello, my 21-month-old son is going to be reintegrated into a normal kindergarten. He already visited a normal kindergarten before we knew the diagnosis of Cystic Fibrosis and we as parents and our son liked it very much. The he could not visit the kindergarten for a certain time because of multiple stays in the hospital (at last on a specialized ward for cystic fibrosis patients after finally finding the right diagnosis). The social worker from the health agency in charge recommended to send our son to a special integrational kindergarten (7 children, 4 of them disabled and 3 nursery school teachers). Therefore I terminated the place in the normal kindergarten. In spite of the fact that our son did not visit the normal kindergarten in the last two months before the termination, his nursery school teacher contacted me regularly by telephone to get to know something about his health situation and she worried about him. She also brouhgt a parcel for easter or for other celebrations (summer celebration) when all the ohter children of the kindergarten were getting a parcel, too. I was very pleased. As she got to know about the termination of óur sons' place, she started crying. She had got very fond of him. When I brought my son to the intergrational kindergarten I was very disappointed and many things went wrong. Therefore I want to know if there is a possibility in the departement Brandenburg to apply for an individual intergration of a CF-patient in a normal kindergarten and has this plan any chance of succeeding?
Inadequate weight gain in Cystic Fibrosis
Hello, Cystic Fibrosis has been diagnosed to our daughter (9 months old at present) at the age of 3 months. Since then we tried a lot of therapeutical options as her weight gain is inadequate, in spite of the fact that she is taking pancreatic enzymes, 30mg taurin and for the last 7 weeks omeprazol a quarter of a tablet two times a day. She is completely breast feeded and refuses other food than mothermilk. Otherwise she is in good condition, the development is according to age, but with 64cm of heighth and 5200g of weight (50cm, 3070g at birth) she is definitively very small and light. I think that her medication is not optimal yet. After starting omeprazol, we had a clear gain of weight over three weeks (200g per week); right now it has been constant for the last four weeks, because we had an episode of diarrhea in the meantime (the stool sample did not show any special findings, except a high content of fat). The doctors keep on telling me to be patient and to try to start her on other food than mothermilk, which does not work unfortunately. Do you have some advice for me, that could help me further? Best regards...
Removal of the gallbladder= prevention of liver cirrhosis?
Dear expertteam, I was wondering about my liver cirrhosis. I was told once, that - when suffering from CF - the reason for a liver cirrhosis could be the gallbladder among ohter reasons. In other words: the bile because this fluid can not flow off due to mucus in the bile duct. This congestion is causing liver damage. If this is all correct, is it not possible simply to remove the gallbladder, the same procedure you do when you suffer from gallstones? The advantage would possibly be that if there is no gallbladder and therefore no bile anymore there is no congestion of bile in the liver either?!? Is this idea completely unrealistic? Many greetings
Vaccination against meningococcal C
Our pediatrician is recommending the immunisation with meningococcal C-conjugate vaccine. Is that vaccination especially advisable for patients with CF or is it perhaps rahter non-advisable? The vaccination could probably done together with the vaccination against influenza - or better not? Thank you and regards
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