Topics

Blood Cough (haemoptysis)
How often is the case that a CF patient dies of blood cough? For how serious it has to be taken if one has only 1-2 tablespoons of blood cough per month? Does one have to list oneself because of this even when the other results are still within the scope (FEV1 up to 40%, 02 97%)? Many thanks.
10.11.2008
Mycobacterium abscessus
Can patients with Mycobacterium abscessus colonisation be transplanted ?
10.11.2008
camper van
Hello, we have just bought a camper van and are planning to travel with our two kids, which both have CF disease, during summer holiday. Are there any concerns/recommendations we should think about ?
10.11.2008
Lung-transplantation centers
Dear ladies and gentlemen, as in the near future I will have to reconcile with the idea of a lung transplantation (LTx), the question of "where?" is coming up. On the one hand one aspect is being near ones home, on the other hand the expectations on a life as long as possible afterwards are of course of greater importance. Hannover (Germany) for example, points out again and again a delightful 10-year-survining-rate of around 50% for double lung tranplantation (DLTx), which is more the 5-year-surviving-rate in other centers and in the ISHLT-register. On the other hand, the selection of patients is different from center to center. I just have communicated with a woman, who had been graded in Munich to be too good for a LTx, while in Hannover, however, she has been listed right away HU (high urgency?) due to frequent exacerbations. Can you assume in Germany, that in case of a similar health status before LTx the chances at different centers are similar, or is the treatment, respectively the success critically different? Yours sincerely and thank you for the answer,
10.11.2008
Costs of Drugs in connection with adult patients (Germany)?
Please notify that the question/answer is made for a German patient asking about the German medical system!: My foster daughter has CF and just became 18. Now a pharmacist tells me that health insurance companies do not pay any longer for drugs like Vitamin E and Ambroxol (Ambrohexal) mucus solvent. Is that correct indeed? If yes, is there any possibility to take action against that decision? She has no income of her own at all and will never be able to pay herself for the mucus solvents which are vitally important for her.
10.11.2008
ABPA therapy - alternatives to cortisone
In case of ABPA (allergic bronchopulmonary aspergillosis): are there any alternative therapies to cortisone? If there is no other possibility, what do I have to pay attention to in case of my daughter ( 9 1/2 years)? Many thanks for your help, Yours sincerely,
10.11.2008
Mould in the appartment
One week ago, I discovered mould at the wall of the appartment. In the room of my daughter. The house management treated it superficially and the wall was repapered. My daughter suffers for months of a sore throat in the morning and often of pain in the joints. We have often been to the doctor, however, he could not find anything. Question 1: Can the sore throat and the pain in the joints be caused by the mould? My son, living in the room next to my daughter suffers from CF. Question 2: Is is sufficient to treat the mould on the wall superficially and to repaper the wall? Are the mould spores eliminated completely by this and can not do any harm to the children? I have been told several times that the mould will come again, as soon as it will get cold and humid again. When is the mould going to be harmful? Only if it is visible as black at the wall or before that? Sorry, these are more questions, but this is very important to me. I am considering leaving the appartment. Many thanks for your efforts, Yours sincerely, a concerned mother.
10.11.2008
Convalescent care with MRSA
How do I get convalescent treatment despite the suffering from MRSA? My nine years old daughter has CF, PSA probably since she was born, MRSA since two years. We, the parents, are physically and mentally down, our nine years old is overstrained by this situation and her school marks have deteriorated, our little one (7 years old) is suffering from pyrosis, fear of loss, nightmares, etc. We have been advised against going to the Black Sea in order to avoid further colonizations! SOS we need a “time out” urgently.
13.10.2008
Microbial situation at the Ostsee.
Dear Expert team, until two years ago, our family went with our 13 year old son, who is P. aeruginosa-free, to Usedom for vacation. In 2006 it was very hot, the sea seemed to be not clean and at that time the bacterium Vibrio vulnificus was detected which led to the closing of several beaches. When I told a doctor that we have a CF child, he did not recommend a vacation in Usedom. We went into a sea Institute and we were surprised that the salt content of the east sea is only 1%. Here is my question: what about P. aeruginosa in the east sea with its low salt concentration compared to the North sea (3% salt)? Furthermore, there is little tide in the east sea. P. aeruginosa is also present in the Mediterranean sea. Is it better to mae vacation at the North sea or at the Atlantic?
02.10.2008
Pets and Lung Transplantation
I have a question: Currently, I am in a difficult situation. I am about to get myself a dog because I always wanted to have one and now I am a house-wife and finally do have a lot of time for the animal. Furthermore, I am widowed and very lonely since December. My psychologist recommended me to get myself a pet. I would like to get myself a little dog from the animal shelter. However, I have been listed for transplantation for approximately half a year now! Is it a problem to have a pet (for example a dog) after a lung transplantation? My (transplantation-) doctor in charge has never said anything against the "risky sport" of horse back riding, that I am practicing as well. But I am just not sure as far as pets are concerned! Please help me!
25.09.2008
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