Topics

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
European CF Wareness Week
Can I order bracelets to participate in the European CF Awareness Week?
19.10.2009
Prevention Pseudomonas
Dear members of the expert team, some CF patients already have pseudomonas infection at the age of 2 where others are only infected at the age of 18 years. Is anything known about risk factors or in other words what can you do to prevent infection (of course I know the guidelines on hygiene and evitating contact with contaminated water). Should we for example forbid our daughter to play in the sand etc?
19.10.2009
Genetic screening
We have a five year old daughter with CF. 3 years ago my wife got pregnant but she had an abortion because the fetus was diagnosed with CF. Which procedure should we follow in order to have a child without CF?
19.10.2009
Swine flu
My daughter has CF and she is going to school for the first time. I would like to know if she is going to get swine flu and how dangerous this may be because I am extremely worried.
19.10.2009
Replacement of tobi
Hello. I would like to ask about a new kind of device (as a replacement for tobi) that will be smaller in size (like the one used for salbutamol). I have heard that it may be commercially available in the next 5-6 months. Is it true?
19.10.2009
Bacteriophages
Bacteriophages have been known since 1916, but have been pursued less especially in the West due to antibiotics. Due to PSA’s resistances, bacteriophages particularly isolated for the PSA of the patient, should gain importance for the patient. My son (5 years old) has repeated PSA even after two years. He had iv therapy with Tobramycin and Meropenem, while inhaling with Tobi® alternating with Cholestin (four-week rotation). After subsequent treatment with Ciprofloxacin, he was PSA positive again and sensitive to Ciprofloxacin. Now he is getting Ciprofloxacin again. Back to the question: is there any serious research on bacteriophages as opponents to PSA? The completely different mode of action would make one forget resistances to antibiotics. Who could provide information on this? Since the bacteriophage only has to be isolated, it is not suited for patent protection and therefore of little significance for the pharmaceutical industry. Of course, if there is any serious work being done on this at all, several years of gathering information on side effects and long-time experiences will certainly be necessary until a therapy could possibly be introduced. Kind regards, Kay
14.10.2009
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