Topics

Danger
Dear expert team, I am the father of a daughter with CF (6). For some time, I have a romance with a young woman who also suffers from CF. She is Pseudomonas positive (mucoid form). Now my question: Can it come with the exchange of intimacies (kissing, ...) to the colonization of Pseudomonas in my nose-throat tract that I in return can transfer to my little daughter? Or is there no danger in this way? Many thanks for your answer.
21.01.2013
Contraception in case of CF with diabetes
Dear expert team, I (22 years old, CF) have a few general questions, that could either not be answered satisfactorily by my gynaecologist nor by my CF-doctor. 1. Which contraceptional method is the one most suitable in case of a CF patient with induced diabetes- except condom? Also in respect of the frequent intake of antibiotics, as well as at the moment itraconazole against candida. 2. Until now, I am taking the pill (Cerazette®, 75µg, contains only gestagens, so called "mini-pill")) and have rather been quite satisfied with it. My BMI is 16, I did not have my menstruation for about 2 years now. Due to the low BMI I however do not know, if this is due to the pill or to the underweight. Furhtermore, I do have bleedings since some days. What is the reason? Due to my health condition (FEV below 30%) by no means I should become pregnant. Due to the diabetes I am not allowed to take a "normal" pill (problems due to the contained hormones). I ask you for a quick answer, as I am at my wits' end with those questions. Many thanks in advance. Best regards,
21.01.2013
CBAVD G551D Mutation
During a diagnostic work-up for azoospermia I (32 years old) was diagnosed with a heterozygous G551D mutation. If this is indeed CBAVD (congenital bilateral absence of the vas deferens), shouldn’t there be a further (undetected) mutation? I have been having slight digestive problems for a year now. Would an appointment at a CF clinic make sense? Many thanks for your answer.
17.01.2013
Clostridium diff.
Dear expert team, A good friend (30 years old) was diagnosed with small numbers of clostridium diff. through a stool test. During some internet research I read that these can be infectious and that they have to be considered a normal intestinal germ in healthy people. I am a CF patient and PSA positive, am taking Zithromax® (azithromycin) as permanent therapy and am not exactly stable with regard to the intestinal flora due to the antibiotics. I also just had an i.v. therapy. What should one do? Would keeping a distance be better for now? My friend visits quite often and we spend a lot of our spare time together. Many thanks.
15.01.2013
construction of house / fireplace ?
Hello, We are parents of a CF little girl of 10 months and we are building our house. As part of the disease, we wonder if there are precautions to observe that could allow her to live in an environment as healthy as possible, and also make our lives easier in terms of hygiene at home. - A ventilation system to favor dual stream, single-flow? - Flooring? - Installation of a fireplace or wood stove avoided? Thank you for your answers.
15.01.2013
High-dose i.v. therapy with vitamin C (7.5g)
Dear expert team, Due to frequent infections (CF patient, 50 years old), my doctor suggested a high-dose vitamin C i.v. therapy (twice a week) in addition to taking antibiotics. This is supposed to strengthen the immune system as a supportive therapy. I am now wondering whether this makes sense, since we as CF patients always have to grapple with bacteria. What is your opinion on this? I also have another question: I have not yet gotten a flu shot. Due to the infections, my doctor does not vaccinate. She usually waits about 4 weeks after I have finished antibiotics, but then usually the next antibiotics therapy starts. Can I get a vaccination nevertheless? I do not have a fever. Many thanks.
15.01.2013
Going to kindergarten or school with MRSA?
Hello, My son (CF) is 25 months old now and has been MRSA positive again and again since he was 3 months old. There have been several eradication attempts, various iv therapies, antibiotics inhalation, and continuous oral therapy with co-trimoxazole. He is then negative for a few months and suddenly positive again. All relatives have been tested, and all are negative. There are no pets. Our house was also tested – negative. We are absolutely at our wit's end. Next year, kindergarten is coming up and I would love to send my son there. We would also badly need the money if I could work more then. He would be going to a regular kindergarten, not to an integrative one. I do not think that is necessary. What about MRSA? Could it be that I will have to isolate my child forever? We are currently attending a playgroup and a music group. Would I have to indicate it there? Do I have to indicate it at kindergarten at all? What if I don't? I just don't know what to do anymore.
15.01.2013
Cystic fibrosis?
Dear expert team, My daughter is 8 years old and has the R1162X – R1084G mutation. We received the cystic fibrosis diagnosis when she was still a baby. At that time, we went to a CF clinic. The first years of her life were unsuspicious. The sweat test was negative. We were told she had CF, but that is was a form without symptoms. At the age of three, she had infections repeatedly so that the CF clinic considered therapy options. From then on, she got Zithromax® (azithromycin) every other day and we did breathing therapy twice daily. When she was six years old, we switched to a different CF clinic because we felt that the therapy up to then in no way compared to our daughter’s health status. She did have recurring infections, but we did not understand why we had to give her antibiotics continuously. In the new clinic, again sweat tests were done. The values were between 15, 22 and 43. We were now told here that our daughter did not have CF because the tests were negative. We were advised to refrain from any kind of therapy since she is a healthy child. This is what we did. Unfortunately, she got worse over time. She got short of breath, could not do sports as usual, and had (slight) infections repeatedly. Over the course of five months, two spirometries were done, both of which were significantly below her usual values. We subsequently resumed breathing therapy (saline solution inhalation once daily, flutter, autogeneous drainage). She got significantly better and the spirometry values were excellent again. During our last consultation at the CF clinic, we were again reassured that she does not have CF. My question now is: does the sweat test alone indicate CF, or does a blood test also reveal something? Could it be that she shows CF symptoms despite a negative sweat test? We are confused because we got two completely contradictory statements from CF specialists. Some say she has CF and want to do a complete therapy; others, on the other hand, think she is completely healthy and that it is only necessary to do a sweat test once a year.
15.01.2013
ABPA or APC?
Dear expert team, I am 22 years old and have CF. For some time now, my IgE has repeatedly been elevated (above 500). A RAST sensitivity class 3 to aspergillus is given; the sputum showed candida above all. The remaining values do not point to ABPA. Does this suggest ABPA? Or could it be ACP? I got significantly better (esp. the sputum amount) during treatment with Sempera®/itraconazole, except for my blood sugar (I have CF-related diabetes), which is pretty out of control. This is due to the itraconazole, isn’t it? Would a cortisone therapy make sense then? Are there any alternatives? Kind regards.
15.01.2013
Right heart strain
Dear expert team, My daughter was diagnosed with right heart strain and I would like to ask whether this means her fitness is a bit limited now. Many thanks.
15.01.2013
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