Topics

Pseudomonas detection
Hello, The serology for Pseudomonas (antibodies)- has it an interest and is it reliable to detect Pseudomonas aeruginosa when sputum cultures are negative or impractical because the child is not expectorating secretions (chronic colonization in the past with no Pseudomonas actually)? What would be the alternatives in terms of exams? thanks in advance cordially
16.07.2016
air conditionning
Good evening I'd like to know if it is possible to have a mobile air conditioner with release of hot air. If it is compatible with CF. Thank you for your answer
16.07.2016
Filter for drinking water
Dear expert team, I am going to travel to Sweden. My question: What is your opinion concerning the following filter for drinking water? https://www.globetrotter.de/shop/outdoor-kueche/wasserfilter-wasseraufbereitung/source-tube-kit-sawyer-filter-275755 [side inGerman] Can a CF patient with this device drink water from rivers without worrying? Or is the risk still very high, to drink bacteria with using this device? Many thanks for your advice. Best regards, C.
16.07.2016
CF even without cough?
I am female, 27 years old, I have problems with breathing since childhood and physical exhaustion, infections. For about one year, I have food intolerances, for 5 months I am short of breath, I am vomiting viscous mucus, have mucous stools, GI-problems (even for a longer time), suddenly gall-stones/operation, salivary stones, kidney problems, thick blood. Is that a hint for CF even without cough?
16.07.2016
Anal prolapse is getting more frequenct since beginning of the therapy with Kreon
Our son has digestional problems for a longer time and got about 5 weeks ago for the first time an anal prolapse. The tests that had been done then revealed that he suffers from CF and the anal prolapse is therefore regarded to be cause by the illness of CF. After the first prolapse, it lasted 9 days after another prolapse occurred. After this, it reoccurred after 7 days. For 3 weeks, our son takes Kreon with his meals. The first reaction was a stool pause for 3 days and since the first stool, that he got after this pause, he has again several times stool a day. Unfortunately, each of these stools is accompanied with an anal prolapse and this even enlarges compared to the first ones and regresses more and more difficult and more slowly. On the one hand this is accompanied with pain for our 3-year-old son, on the other hand we had once to go to the CF Center where a pediatric surgeon had to replace the prolapse. One cannot talk about a spontaneous regression anymore. Can these freuqent prolapses could have something to do with an intolerance of Kreon? In order to keep the stool soft, the CF Center prescribed today Makrogol, which we should give for 3 weeks twice a day. Is this a solution, to soften the stool and at the same time give Kreon? I am worried, to do it like this and to experience several times daily an anal prolapse, that is regressing more and more difficult spontaneously. Many thanks for your answer!
16.07.2016
Meveol®
Dear expert team, I read something about the development of Meveol®. It seems to be very promising to me. Is there anything new at the moment about this topic? Can one make a prognosis, when the drug will be on the market? Many thanks in advance.
16.07.2016
ABPA and horse riding
Dear expert team, I am 29 years old and suffer from CF with a quite stable FEV1 value of 65%. In the last years, there was two times the suspicion of ABPA, as I had dyspnea, but no antibiotic helped. The blood values were never really clear, but since then I take 5mg cortisone daily, have Aspergillus in the sputum in spite of this but no special problems with ABPA anymore. Already since childhood, I have the great wish to learn horse riding and would now like to really learn it. Do you consider this to be too dangerous regarding the ABPA? If yes, is it possible under certain constraints (e.g. not to clean the stable)? I have even looked for a stable, where one can enter each horse box from the outside and where one does not need to pass the narrow stable ways, so that I would be as much as possible outdoors. What else do I have to pay attention to? If I should realize that I suffer from dyspnea in connection to horses, I would of course stop it immediately. Could I then expect, that after a possible cortisone therapy everything returns to be as before or is there a great chance that irreversible damage occurs? Many thanks in advance,
16.07.2016
Endoscopy of the gut
Hello, Today I had an endoscopy of the gut. This was done, after I had lost uncontrolled greater amounts of stool in short time intervals. I am a 54-year-old CF patient in a relatively good health condition with an FEV1 of 50-65% (this varies according to the season) and I suffer i.a. from seizures (once a grand-mal seizure). My question concerns the endoscopy of the gut, as it was done under propofol. During the investigation I was “wakened”, because I had a strong cough and therefore they were not able to operate the 1.5 cm large pediculated tumor in the terminal ileum. However, biopsies were taken. Furthermore it reads…”during the investigation there was a marked prolapse of the rectum about 10cm, triggered by the cough.” I still felt not well after the investigation due to the still bothering cough. On my question, how it could happen like this, the doctor said, it might most probable be due to my illness of CF. I now searched the internet and found that propofol has a frequent side effect cough and seizures. Why do I have to fill in 4 pages of history, if nobody reacts to it…one could have given me cough suppressant (codein) or is this forbidden during such a procedure? Now I have come through the torture, however the polypi are still there and should be removed together with the rectopexy in general anaesthesia. An operation with our diagnosis and also in my age is always accompanied with special risks…I am afraid of this. What do you recommend, another endoscopy? With another drug, in order to remove the polypi? And what is concerning the prolapse, there are alternatives, one could try bio-feedback training. Much information and also a bit confused…however I hope, that I get advice never the less, how I could proceed the best. Many thanks
16.07.2016
Blood in the sputum
Dear expert team, Pseudomonas aeruginosa has been found in my sputum. Already a few months ago, I did inhalations with Colistin (2 x 1 Mio). I tolerated the inhalations well. The health condition improved. As Pseudomonas has soon been found again, we decided to do a 3 months eradication therapy with an increased dosage of Colistin (2x2 Mio) and additionally Ciprofloxacin (2 x 750). The therapy has been tolerated well for 4 weeks (apart from the amount of mucus increased markedly,it is turning however more and more lighter). After 4 weeks of therapy, blood in the sputum occurred. On the first day it was quite much (a few ml). After this, Ciprofloxacin had been stopped, as coughing blood is listed in the leaflet as a possible side effect. Colstin was intermittendly reduced to 2 x 1 Mio dosage. I continue the therapy like this for further 6 days (thus only Colistin 2 x 1 Mio). At the daily coughing-up however, still blood is coming, in the form of several little blood streaks. I read in the literature, that coughing blood can also be a side effect of Colistin inhalation. On the question, if one could go on inhaling Colistin, it is written: “benefit and risk have to be weighed against thoroughly.” Now I would like to weigh up damage/risk and benefit. The side of the benefit is clear: it is the hope to eradicate PA. For this reason my treating physician is of the opinion, that I should continue the therapy. On the question, which damage I may cause due to ongoing inhalations of Colistin in spite of hemoptysis, he could unfortunately not make a comment. My questions concern the topic damage/risk. Which risk do I have if I would go on inhaling Colistin in spite of hemoptysis? I imagine it to be like this, that the mucosa is very irritated by the Colistin and therefore turn out to be thinner or more inflamed, so that it is bleeding now. Is there the risk, that by further inhalations the damage of the mucosa is getting so hard, that this damage stays irreversibly in the mucosa? Or that the ciliae will be damaged irreversibly at the places of bleeding? Or can one assume, that no irreversible damage is staying in the mucosa as soon as inhalations are finished? According to the opinion of my doctor, a short term interruption of therapy would risk the success of the eradication therapy: due to one moth of the intensive therapy the number of germs was markedly reduced. Due to a pause, the resting PA could start again multiplying massively. Therefore I could in the worst case come back to “point zero” of therapy. Many thanks for your answer, Best regards, L.A.
04.07.2016
Insulin
Hello, We are parents of a CF 5-year-old child. We were asked to "think" and "give an answer" to a proposal of the CF doctor: prescribe our child "a small dose of insulin daily, free blood glucose measurement, preventive." We fail to understand this question, because we are not doctors... Thank you in advance for your response that we "enlighten" and that will help us answer this question.
04.07.2016
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