Topics

fruits and vegetables
Hello, how well do I have to clean the fruits and vegetables to avoid contact with germs at risk? Is it possible to wash them with chlorinated water and in which concentration? We will soon start food diversification of our baby with cystic fibrosis and we would like to prepare his meals, but whithout risk to bring Pseudomonas aeruginosa at home via the potatoes, leeks and carrots ... We recently tried the frozen vegetables for us and we were embarrassed to find a crunsch in our soup! Because of sand I suppose! What do you recommend? Thank you for your response
21.10.2013
Inhalation in case of resistant Pseudmonas
My son is 33 years old, mutation genotype deltaF508 and R553x. He has inhaled colistin for decades and now his Pseudomonas germs are resistant. Furthermore I ask myself if it is not possible however, that in case of such a long exposure colistin passes minmally the blood-brain barrier as he reacts so solwly in his verbal communication....I ask myself if the colistin makes sense anymore. Against tobramycin there were resistances since he is 9. At his yearly i.v. therapy he always got ceftazidim in combination with amikacin. There is partly sensibiltiy to aztreonam that would also be possible to inhale and seemingly also to amikacin - that has not been tested at the last antibiogram and he should soon get his next i.v. with tazobactam. Probably Slit amikacin would be a good alternative to inhale - as he has a stop-mutation. I would like to thank you very much in advance for your commitment.
21.10.2013
Stenches in the house
Hello. My 3 year old daughter has cystic fibrosis. We had a leakage problem last year. And since, we have stenches in the house like smells of sewer. Is there a danger for my daughter? We tried disinfecting sprays without success. The smell comes back. What can we do? Thank you for your answers. Cordially.
15.10.2013
Iron
Is there a problem to iron with a steam iron the clothes of my child who has cystic fibrosis? There is always a little water in the iron: is the heat sufficient to destroy any germs, bacteria? Thank you for your opinion.
15.10.2013
Horvi therapy
Can a therapy with Horvi snake poison enzymes positively influence the illness of CF concerning chronic inflammatory parameters, susceptibility for infections and the further course of the illness? Many thanks for your answer!
15.10.2013
Prophylactic therapy in order to avoid esophageal varices in case of portal hypertension?
Dear expert team! First of all I would like to articulate my cordial thanks and respect for everybody of the team! I am very glad, that you have such a great human commitment and answer anonymous patient questions! A short word about me: I suffer from CF, I am 26 years old and have a very good general condition: I do a lot of sports, weigh 82 kg with 180cm height and I cannot be distinguished outwardly from a healthy human being. In the main focus of my CF is my liver: since I can remember I have a liver fibrosis (mainly at the bile ducts) and since 2001 also an enlargement of the spleen. 2012 the diagnosis "beginning liver cirrhosis" was made, that pulled the rug out from under my feet. However, in spite of this, my blood values are without any exception in the normal range (bilirubin: 0.3-0.7, pTPZ 27 sec.), borderline are only however the alkaline phosphatase as well as the number of thrombocytes (about 150 - 160). My CF-center is of the opinion that my blood values are excellent, therefore I am allowed to eat what I like (no alcohol is taken for granted). Now to my concrete matter: As until 2012 I did not engage myself deeply in the progress of my CF, as I was doing always fine, I caught up on this until today very intensively due to the "new" diagnosis of a beginning liver cirrhosis. Thereby questions came up my mind that concern mainly my portal hypertension (thrombosis can be excluded according to the ultrasound finding) and the possible development of esophageal varices. The latter could fortunately be totally excluded in the ultrasound finding from august 2012. However I am afraid, that the portal hypertension increases and collateral circulations are going to appear. As I am a very active person and the wish for doing something is namely in my nature, concerning my liver and its portal hypertension, I would like not only to watch how it is doing collateral damage, but I would like to avoid the development of varices in the esophagus! Is it advisable in my actual, shortly presented course of illness, to lower the portal hypertension with drugs, in order to aviod the development of esophageal varices and other collateral circulations??? Is that possible at all? I would very much like to do everything for this and get prophylactically active. Are there any options and drugs for prohpylaxis of varices via reduction of the portal hypertension that I could propose concretely to my CF-center at my next visit? For your efforts, your human commitment for all of us questioners cordial thanks! Berst regards, M.
15.10.2013
Nasal spray
Hello, I had asked a question to you about the nasal spray sometimes ago, but my question was not good. I wanted to know how long the spray can be open before there is a risk of finding Pseudomonas aeruginosa in the spray. You said “2 months”. Do you think that the spray could not be used after these 2 months because of the microorganism? Thanks for your response.
15.10.2013
medicines (small molecules)
I try to find medicines or research projects for possible medication for class V and VI mutations. For class V mutations, the mRNA splicing does not work properly or the transcription level is too low, as for class VI mutations, there is not enough CFTR channel in the membrane because the increased turnover of the protein from this mutation. It seems I can’t find information whether there has been an attempt to make specific small molecules (mutation-specific medicine). Is that right or didn’t I find it?
14.10.2013
MRSA
Dear expert team, I am 42-year-old CF patient (F 508 / 2789+5G-A), however in very good general condition (FEV1 5.63 L. 98 kg body weight (athletic)). Besides 2 times daily inhalation with sole NaCl solution I do not any further therapies. Once a year, I have a control at the CF-center. Unfortunately, at the last control of the throat swab, multiresitant Staphylococci have been found. The CF-center recommends an eradication trial with fusidic acid and rifampicin or linezolin and rifampicin, as a colonization with this germ can lead to a loss of lung function. I have now 3 times used nasal ointment with mupirocin and mouth wash with octenidin (antibacterial)for a week, the germs however are still detectable. My general practitioner has concerns because of the side effects of rifampicin, I am also of this opinion, especially as I know that my stomach revolts in case of very little amounts of pain killers. What is your opinion, do you share the opinion of the CF-center? For a quick answer I thank you in advance.
14.10.2013
Scuba diving in the swimming pool
Hello. Our 13 year old son would like to dive with bottles in the swimming pool but we don’t know if this activity is consistent with cystic fibrosis. Could you guide us? Thank you.
07.10.2013
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