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Topics
- R668C and M348K mutations
- Good morning, my husband has the R668C mutation (he is carrying the atypical form of CF) and I have the variation M348K. My cousin has the mutations M348K and S912X and he is healthy, but his son has the classical form of CF with the mutations delta508, S912X, M348K. Which are the risks that me and my husband have a baby with the classical/atypical form of the disease? Thank you, best regards
- 01.08.2012
- Treadmill workout and oxygen
- Hello! I have been dependent on oxygen for quite some time. Recently I was given a treadmill as a gift and would now like to work out effectively. Currently I am trying intervals, alternating 8 km/h until the oxygen saturation sinks below 85% and 4 km/h in order to relax (at 6 l O2). I do this twice every day. Does this make sense, or what would be a better way to do it? Kind regards.
- 01.08.2012
- MIGLUSTAT
- Hello, The latest results of Miglustat's clinical trials were not those expected. Are researches on this molecule definitively abandoned? Thank you in advance for your response
- 30.07.2012
- Vessel problems with i.v. therapy
- Dear experts, I am 31 years old and currently in the second CF stage, and before all else, let me say that a port is not yet an option for me. I have already had several i.v. therapies, although the last three have not been completely without problems. The therapies as such were successful, but each time a part of the vein between the entry point of the needle and the tip of the cannula, i.e. three parts in total, were destroyed. Therefore, fewer and fewer vessel areas are remaining that can be used. I am wondering how this could happen three times in a row. Did I disregard any danger signals, should I generally have changed the cannula earlier (5-7 d) since the aggressiveness of the drugs severely irritates the veins, or are there other preventive measures? Thanks in advance for your answer! Kind regards.
- 30.07.2012
- Mutation
- On our genetic result sheet the mutation "r334W/F508 del as well as p.Arg334 Tsp" is mentioned. The mutation 508 seems to be frequent. The other mutation seemingly not. Could you give us more detailed information on the above mentioned mutation? Many thanks.
- 30.07.2012
- 9 years after lung transplantation: I wish to have a child!
- Hello, I am 35 years old and had a lung transplantation due to CF in 2003. Now me and my partner we wish to have a child. I do not have any problems since the transplantation and not a single rejection and I am doing very, very well. My medication is: tacrolimus, MMF, cortisone 5 mg, pantoprazole 40mg and a few vitamins as iron, magnesium and vitamin D. Also with the medication I do not have any problem and I tolerate everything well. Is it possible? Did this happen before? That a lung transplant recipient gave birth to a baby? And how was the outcome? I wish it soooo much… Many thanks for a soon answer.
- 30.07.2012
- VX 770 without effect
- Hello, after taking VX770 for four weeks, I (29 years old, FEV 32%) could not detect any measurable or subjective improvement (FEV unchanged and large amount of secretion as usual). Since, apart from having the G551D mutation, I am also G542X carrier, the question is whether this second mutation could possibly "prevail" and thus explain the lack of effectiveness of VX770. If not, do you happen to have any idea what could be the reason for this "standstill"? Many thanks for your answer.
- 30.07.2012
- Ascites puncture (paracentesis)
- Dear expert team, From what point onwards can ascites puncture (paracentesis) out of therapeutic indication (rapid relief of dyspnea or abdominal pain as a result of large amounts of ascites) make sense? Is it likely that ascites will reoccur in the stomach soon? Kind regards.
- 30.07.2012
- Preimplantation check
- A friend of mine is a carrier of the F1052V mutation and her husband is a carrier of the 621+3A>G mutation. Do they have to do a preimplantation check? They will proceed with an IVF due to azoospermia.
- 30.07.2012
- Lab Equipment
- HI I have a son with CF. We are trying to improve facilites etc in the regional CF Centre. I have come across some info on a piece of lab equipment for detecting bacteria in sputum and blood samples. It seems the results are available within 24hrs. Have you come across the "MALDI TOFF"? Pseudomonas results etc can be picked up within 24hours, this information I feel for a CF patient would be of great benefit. Would you have any idea as to the cost of such a piece of equipment. Thanks
- 23.07.2012
