ecorn-cf: App. question list

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Topics

Infection control: Infection control seems very important in the care for patients with cystic fibrosis. What is the standard of care?; 20.10.2009

Air-source heat pump: Is it sensible with a CF diagnosis to install an air-source heat pump with controlled living space ventilation? Many thanks for your prompt answer!; 20.10.2009

Mutations p.G542X p.R1162X -- Progression: Our daugther is two years old. She was diagnosed at eight weeks due to increased trypsin (newborn screening). So far she has been healthy. :-) Lung: pap smears always ok, no cough, no mucus obstruction. Pancreatic enzymes: ca. 100-150 mg of pancreatin for children daily. Does the mild progression fit her genotype? Do you think one can already predict now that there is a certain chance our daughter’s disease will remain limited to the pancreas? If not – at which age could one give a prognosis about that? Kind regards and many thanks in advance.; 20.10.2009

Cat in the bed: Dear expert team, I noted with delight that I can keep my cat even after my transplantation. However, I was advised not to clean the litter pan myself and not to allow my cat to get into my bed. Unfortunately, I have an open passage way between my living room and my bedroom and do not know how to keep my cat from continuing to sleep with me. She is an absolute house cat and toxoplasma negative. Am I taking a risk if the cat will continue living with me under these circumstances? Than you for an answer. C. Z.; 20.10.2009

Dwarf rabbit = germs?: Hello dear expert team, our dwarf rabbit is hobbling around freely without a cage (only) in the living room, where we also put his “rabbit toilet,” a box of ca. 20x30 cm which we wash out and fill with splints and straw every day. There is a small bowl filled with dried granules and hay standing next to it. Our son (chronic PSA) “only” cuddles with the rabbit. Nevertheless I would like to know whether all this can be considered a safe source of pseudomonas, aspergillus or other germs and whether we should get rid of the rabbit if necessary?? Many thanks for your answer.; 20.10.2009

Anaemia caused by iron deficiency: Dear expert team, I have an anaemia for a longer period of time (more than half a year), i.e. Hb value of approx. 11.2. My CRP is usually within the normal range, but just lately is was increased. My iron values are okay, except the iron value that is 8,9, – which means – at the limit of the normal range [remark by translator: the original German sentence also says “My iron values are okay, except the iron value…” which is confusing]. Transferrine and ferritine are okay. The transferrine saturation is slightly too low. However since the iron stores are completely in the normal range I assume that there is no iron deficiency that requires the intake of iron in the form of tablettes. Is an iron deficiency existent if the iron values are too low in such a marginal way? Or in other words: Can this alone be the reason for an anaemia? My kidney values have been check with regards to the anaemia and are okay. Thank you very much.; 20.10.2009

Throat swab, how often????: I asked the doctor of our outpatient clinic if it is possible to have a throat swab done every 4 – 6 weeks instead of every 3 months. She is of the opinion that one would end up driving himself/herself crazy [if the test was done too often; remark of translator] and that if the child had no symptoms one could assume that there was no pseudomonas infection. Are you of the same opinion or does it make sense to do the swab after shorter periods in order be able to take measures even before the first symptoms occur? Thank you for your answer.; 20.10.2009

Children: My former girlfriend told me that she was pregnant but that the “child” died because of her medication for CF. I don’t believe her because I haven’t heard about something like that. Most people around me think that this story is very vague. Can you help me understand this?; 19.10.2009

Renal transplantation: I am a CF patient and need a kidney transplantation. I have a donor who’s been approved. My physician doesn’t want to perform the kidney transplantation because the medication for rejection would destroy my lungs. Now I have learned that there were transplantations performed in Boston where stem cells of the donor were used which made rejection medication unnecessary. I was wondering where in the Netherlands this procedure is being performed? Is this be something for me? I would like to get more information about this method. I could not find much information on the internet.; 19.10.2009