Topics

Vacuum cleaner
Hello Considering the cloud of dust, is it better to have a vacuum cleaner with or without bags? And about the steam cleaner, is it safe and healthy? If I use the steam cleaner in the bathroom, is it efficient to kill bacteria and replace chlorination? Thank you for taking the time to answer all our questions.
10.01.2013
Impact of the disease on relatives
Hello, I have two young children who live every other week with their dad, who just started a relationship with a woman with cystic fibrosis, waiting for a lung transplant. He decided to introduce her to my children, and I want to know the psychological risk for my children. I only know that she is 35 years old and she is on the transplant list. What are the chances for her to have the transplant in time? Is transplant proposed only at the terminal stage of the disease? I have a lack of information and their dad is not looking for information, because he does not want to face reality, but this involves my children so I would like to have answers, before exposing them to life with this disease. thank you
10.01.2013
Great concern – requesting an answer
Dear expert team, A friend of mine has CF. She now has the following germs in her sputum: high counts of Pseudomonas fluorescens, Burkh. gladioli, Enterobacter, Candida albicans, and masses of Haemophilus parainfluenzae. The Burkh. gladioli had been detected often before. The Pseudomonas is new. She has had repeated iv antibiotics therapies, which she never tolerated well. She often did not tolerate tablets well, either (diarrhea). Recently she has been doing inhalations with TobiPodhaler®. Now my friend is supposed to get an i.v. therapy with the following four drugs: Genta® (gentamycin), Tobi® (tobramycin), meropenem, and either Zienam® (imipenem/cilastatin) or ertapenem. The rest of the therapy looks like this: Mucoclear® (hypertonic saline) 4x3 daily, Atrovent® (ipratropium bromide) with Sultanol and 0,9% NaCl three times daily, Pulmozyme® (DNAse) 2x1 and Toby® (tobramycin) dry inhalation 2x daily, plus physiotherapy 2x daily. We are concerned about this strong i.v. therapy. Would it make sense to get a second opinion (CF clinic)? Or is such a strong therapy the only way to help in this case? Do you have any experience with this combination of drugs? And another question: Which significance does the Burkholderia gladioli have? Is it dangerous, does one have to be isolated with it? Can one go into rehabilitation treatment with this germ? Many thanks for your answer, and please excuse the number of questions.
08.01.2013
Which criteria does a cat have to meet in order to be allowed to move in?
Hello! Since I (27, female, CF) grew up with pets, my partner and I have been pondering for some time about getting our own pet in our apartment again. It so happened that my great-aunt has now died and left behind a kitten who was born outside but then declared herself a house cat. Which health requirements would the cat have to meet in order to be allowed to live with me in the future, also regarding a possible transplantation in the coming years? During the patient briefing, I was told that dogs were no problem at all but other cats were "critical." One general note, I would like to thank you for your always helpful advice on both this question and past as well as future ones!
14.12.2012
Follow-up question on PID and CF
In Dr. Christina Smaczny's answer to the question "Diagnostics during pregancy, and termination" [http://ecorn-cf.eu/index.php?id=65&tx_expertadvice_pi1[showitem]=2028&tx_expertadvice_pi1[search]=PID], the following passage can be found: "Due to the methodical effort involved, this procedure [PID] should only be an option for couples for whom the risk of having a child with CF is at 50% and who will have to undergo IVF or ICSI treatment anyway." Is this comment based on relevant sources, or does it (only) the author's personal point of view? From what I have understood so far, if both parents are CF carriers, the ethical review committee can be expected to approve PID at any rate, since the 25% likelihood is high enough. To my previous understanding, the question to which the effort is justified could be decided individually by the parents and the treating doctor after dealing with the issue thoroughly.
14.12.2012
Steiner schools
Hello, what do you think about education of a child with cystic fibrosis in a Steiner school? The concept of freedom and openness could be a disadvantage in terms of hygiene and precautions against germs? Thank you
14.12.2012
Hypertonic saline solution – study results for small toddlers
Dear expert team, Our daughter (now 15 months old) has been inhaling hyptertonic saline solution for 10 months (currently 3ml 3% twice a day, planned to increase to 6%). Now I came across the results of the following study: “Inhaled hypertonic saline in infants and children younger than 6 years with cystic fibrosis: the ISIS randomized controlled trial. Rosenfeld M, Ratjen F, Brumback L, Daniel S, Rowbotham R, McNamara S, Johnson R, Kronmal R, Davis SD; ISIS Study Group. JAMA. 2012 Jun 6;307(21):2269-77.“ I am wondering whether further treatment with hypertonic saline solution makes sense. I would be grateful for your assessment including reasons! Kind regards.
13.12.2012
Cause of cough?
Dear expert team, my son (CF, 4 years old, 1.07m, 16.5kg, mild progression so far) rarely coughs when he does not have infections, only during strong physical action and sometimes after inhalation. For some time now, he has also been having a continuous cough (dry nervous cough) that starts roughly during the first hour after going to bed. The CF clinic has therefore prescribed us Antra MUPS® (omeprazole magnesium) 20mg. Suspicion of reflux. A probe test was not done. After about 6 weeks the problem was solved. We stopped the medication and were “cough-free” for about two months. Currently the cough is back again. I am now wondering: could it be from the inhalation? Is it normal, and do other children with CF have similar symptoms? Or is it perhaps reflux after all (apart from the coughing after going to sleep, my son does not have any typical reflux symptoms)? Many thanks for your answer.
13.12.2012
Physiotherapy and problem germs?
Hello, Physiotherapy has always done me good, and I would like to start it again. Unfortunately, I am colonized with MRSA (currently only lungs and throat, the nasal and skin swab was negative). Here in my area there are only 3 phsyiotherapists who are experts in CF. One of them does not treat MRSA patients at all, the others only do house calls, but they cover up completely on the stairs outside (green gown, surgical mask, shoe covers). As you can imagine, I feel very uncomfortable about this with my neighbors; since I have moved and the landlords asked strange questions even so much that I have not been doing any physiotherapy at all for about a year. I am not even supposed to touch the prescription, and the therapists have always scheduled me to be the last patient of the day. I actually think that some of these precautionary measures are utterly exaggerated. What do you think -- which of them makes sense, which does not? I would like to forward your answer to the practice. How do other physiotherapists deal with the problem?
13.12.2012
Follow-up question on nasal irrigation
Hello, I understand the problem of tap water potentially being contaminated with bacteria. What do you think about the following alternatives to boiling water: 1) distilled water 2) non-carbonated bottled water Can I use these two alternatives instead of tap water for nasal irrigation or are there any risks/concerns? Many thanks.
13.12.2012
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