Topics

CF and the wish to have a family
Hello, I am 29-years old and have CF and for 15 years also diabetes (however, I am in a realtive good health status: FEV1 is differing between 74% and 83% according to infections, allergy against polls). I am very sportive (running, Mountain-biking, sports in the mountains: climbing, walking, ski-tours....) At the moment I am in a little life crisis, as the wish to have a child is coming up nearly every day and on the contrary the fear about the future with CF and the fear about the great resposibility to have a child is coming also up. My partner and I talk about family planning (also he likes to have children), however he is also afraid, that my health status may worsening and I believe he has not enough courage. I had never thought, that once the wish to have own children could be so great in me. These permanent thoughts can one sometimes really tear apart and the treadmill of thoughts is turning around constantly. I am missing the contact to affected people. Also in the internet one can read only, that there are CF patients with children, however not, how their health status has been at the beginning of pregnancy, how they cope the daily life, which experiences they make in general. Furthermore I do not know, if I am already too old, in order to think about family planning at all, as a pregnancy has first of all to be successfull and in here years could go by. Furthermore I am afraid, that if the wish will not come true (due to a decision against a child or because it was not successfull), how one should cope with the emptyness, if people/friends around oneself are pushing a buggy happily. The situation at the moment is not very easy. My question: Where can I find reports from CF women, who gave birth to a child? Where can one come in contact? AND: In which health status is family planning sensible at all? I would be very pleased about an answer. Many thanks.
03.10.2015
Pseudomonas, the insecurity
My daughter had a positive swab and after a short time also antibodies in the blood. Now we have inhalation of Tobramycin, Ciprofloxacin orally, home i.v. with Tobramycin and Ceftazidim and now inhalation of Colistin. If the Pseudomonas will now be positive for a longer period of time, is there still a chance of getting rid of it?? We are still inhaling Colistin for one year, under this, she is not going to be 100% negative. If now no antibodies can be found anymore, can one assume under the current inhalation therapy that it has gone away?? Thank you and regards, V.M. [The question below has been asked just after the question above, so that we assume, that these question are connected] "Pseudomonas--I refer to my former question. My daughter has now received an i.v. therapy with Tobramycin and Colistin. Does it make sense to change every 4 weeks from Colistin to Tobramycin? Can it be that it is only suppressed and one year after the complete finishing of the antibiotic treatment it is there again?"
28.09.2015
3849+10 Kb C /F508del
Hello I wanted to know if the Guthrie test detects primarily pulmonary cystic fibrosis? Knowing that this test is sensitive to pancreatic enzymes... Thank you
28.09.2015
Popping in the knee
Hello, Since a few years I (28, CF) have sometimes more, sometimes less problems with joint pain, especially in the knee. My CF doctor does not see any need for action. About 1,5 months ago the left knee started suddenly to make a popping sound whenever I stretched it and it still does since then. The popping is not painful but I noticed that I try unconsciously to avoid the popping by putting more pressure on the other knee. I am a bit concerned if this could be somehow relevant. Could you give me an advice if I further action is needed or if I can ignore this? Many thanks! Best regards
28.09.2015
Pulmozyme®
Is Pulmozyme® an aerosol? Do we have to use the e-flow device? With disposable kits? Thank you for your help.
28.09.2015
Staphylococcus (MRSA)
Hello, My 8-month-old son carries a resisting staphylococcus in his lungs. Is there a risk that one day this bacterium "moves" and affects others organs or that it becomes a "generalized" infection? If he has a wound for example. Furthermore, is it dangerous for the others to go with him to maternity hospital to visit a friend who has just delivered? Thank you very much of your help
19.09.2015
Hope for cure
I am a carrier of two mutations, G542X and 2183AA>G. Are there any grounds for hope for a cure in my case? If yes, what does it mean and what will change in my everyday life? If not, is there anything being done for my mutations, or are they rare and indifferent to the researchers?
19.09.2015
Pseudomonas aeruginosa
Dear experts, Is there a test available that can test the presence of Pseudomonas aeruginosa in the water?
19.09.2015
Genotype 7T/7T
My husband was tested for mutations in the CFTR gene, and in the results it writes: “ the genotype 7T/7T was detected in the sample in relation to the polymorphic region of the CFTR gene”. Does the above mean that my husband is a carrier of the disease? The reason for him being tested was oligoaspermia.
19.09.2015
Contacts between patients
Hello, I would like to know measures to be taken when CF patients are in the same school? Thank you in advance Cordially
15.09.2015
<<  < 53 | 54 | 55 | 56 | 57 | 58 | 59 | 60 | 61 | 62 | 63 | 64 | 65  ...  342 >  >>