User login
Enter your username and password here in order to log in on the website:
Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
- allergy
- animals_pets
- antibiotic therapy
- asthma
- complementary medicine
- covid-19
- diabetes
- diagnostics
- drugs side effects
- drugs under development_genetic therapy
- ENT
- general aspects
- genetics
- health care
- hepatobiliary disease
- hygiene
- i.v.-lines
- inhalation
- lung
- microbiology
- miscellaneous
- modulator therapy
- MRSA
- nutrition and GI problems
- oxygen supplementation_therapy
- physiotherapy
- Pseudomonas aeruginosa
- psychosocial
- public facilities
- recreational activities
- reproduction
- research
- social law
- sport
- swine flu_novel influenza
- transplantation
- travelling
- vaccination
- ventilation
Topics
- Cruise on a ship
- Hello, We are considering a cruise. We ask ourselves if our daughter with cystic fibrosis may participate in this cruise regarding hygiene, water tanks, swimming pool ... Thank you for your reply. Cordially.
- 20.01.2014
- Cortisone
- Hello dear ladies and gentlemen, as the effect of a normal antibiotic i.v. therapy in spite of early great successes unfortunately does not last very long anymore (CRP increases and increases...) and furthermore my kidney values are getting always very bad during an i.v. therapy, I would like to try cortisone for a few months, in order to be able to build up again a few resources. Oral long-term antibiotics (cotrimoxazole, azithromycin, ciprofloxacin, levofloxacin), aztreonam and colistin for inhalation does not really help me anymore, either. As I am with my back to the wall due to my bad kidney values, the question arises if I should not simply try it once with cortisone. What is your opinion on this? Does one take a risk that is too high? My center, unfortunately, does not have any ideas respectively proposals, however just consents to many of my things. Like this we agreed on starting cortisone today with 5 mg. I am looking forward to an answer! Yours sincerely,
- 20.01.2014
- Babies' bronchi often congested
- My 14-month-old girl has a failure to thrive, she now weighs 7 to 8 kg for 67 cm, has also chronic diarrhea and constant bronchial congestion, is regularly treated with antibiotics and corticosteroids. Her respiratory therapist thinks for some time she has cystic fibrosis. Her doctor told me that as the screening has been done at birth it cannot be that disease. Is it possible she has CF and screening at birth was negative?
- 20.01.2014
- Mutations
- Hello, my child has 3396delC mutation and M1101K mutation. Can you tell me something about these mutations? Thank you in advance.
- 20.01.2014
- Airing at night in the wintertime in case of CF
- Hello, I come across again and again differing opinions form physicians, concerning the nightly tilting of the window in the wintertime. One physician says, it is better to keep the windows closed, as outdoors the cold air would be too dry. The other arguments in favour of opening the windows, as the house is heated and even if there is no heating on in the bedroom, the air would be better in any case for CF patients with an open window. Could you give me a clearer answer here? I do already the following: wet towels and water bowls on the radiators, regluar airing and switching off the heating during sleep. Many thanks in advance
- 14.01.2014
- Home i.v. - peripheral venous catheter or butterfly
- Dear ladies and gentlemen, I have just had a home i.v. therapy. As this has been my first i.v. therapy, I have been stayed 2.5 of the 14 days in hospital, the rest of the time at home. The infusion of daily 3 x 2g meropenem was running over the whole time through a peripheral venous catheter. I did not have any side effects due to the meropenem, however, the peripheral venous catheter had to be changed for 6 times altogether, as the catheter was blocked; a reddening or pain occurred or the infusion was running into the tissue. Often the vein was inflammed at discharge of the catheter. I have now heard from my physiotherapist, that some patients get the i.v. therapy with a butterfly instead of a peripheral venous catheter, that is placed anew for each infusion and is afterwards immediately discharged. My question is now: which of both methods can be recommended? With which method the danger of getting a long-term damage to the vein is the smallest? I want furthermore to add, that a friend of mine who is physician would place the butterfly, so that you can assume that the infusion is done professionally. Thank you for your efforts!
- 14.01.2014
- Colloidal silver
- Dear expert team, can colloidal silver be used in case of CF for prophylaxis of flu-like infections? The germ-killing effect has indeed often been investigated. As being a person without CF I have personally made good experiences. Now, my girl-friend (CF Patient) would like to try it also, however she does not dare as she is insecure if there are any interactions with other drugs. Many thanks for your answer.
- 14.01.2014
- State of mind
- My brother was diagnosed with cystic fibrosis. He died in 2007. He waited for a transplant… I realize now that I do not have all mourned. I'm still unhappy, I miss him. I’m full of regret! I realized that I needed a psychologist. I'm 35 and I can not move forward ... neither professionally nor on the sentimental level... I'm freezing. I live on Xxx, should I contact a psychologist specialized in cystic fibrosis, or a "normal" psychologist? Cordially
- 13.01.2014
- Belt during physiotherapy/inhalation
- Does it make sense for my one-year-old daughter with CF to put a belt (or bandagae,...what is the technical term here?) around the thorax during physiotherapy and inhalation? If yes, can this "belt" be prescribed as a therapeutic appliance? Many thanks!
- 13.01.2014
- Ionisator
- Dear expert team, do you have any experience with devices for ionisation of the room air? The improvment of room air quality is for sure advantageous for CF patients? Many thanks
- 09.01.2014
