IVIG infusion
At age 25 I had diagnosis of Allergic bronchopulmonary aspergillosis At 59 my current age I had a diagnosis of CF by a CF doctor. I have a Delta F508 gene and the 5T variant. I also have a Primary Immune deficiency diagnosed by an immunologist. I had no titers to the pneumonia vaccine. In December of 2011 I had a pulmonary embolism. I was put on Warfarin. I am told I will be on Warfarin the rest of my life. I also have neuropathy. I have a follow-up appointment with a Neurologist in December. I went back into the hospital after the sinus surgery because I fell several times. I hurt myself and there was a concern I would hit my head. There was a concern that I had Multiple Myeloma. The Hematologist determined that I had MGus. I have had sinus and pulmonary problems all of my life. In the last year I have been in the hospital 11 times for a total of at least 4 or 5 months. In October I had sinus surgery. Burkholderia Cepacia along with 2 additional bacteria was cultured from my sinus and lungs. In the last year I think I have had 11 different bacteria cultured. I have been on intervenes antibiotics for most of the last year. The Immunologist would like to start me on IVIG infusions which would be another thing to be on the rest of my life. I don’t think that antibiotics every 6 to 8 weeks is the way to go for the rest of my life. What are your thoughts on the IVIG infusion?
Eradication of Pseudomonas aeruginosa infection
My daughter cultured Pa at the last clinic visit. It was symptom free. The doctor prescribed 28 days of Inhaled Antibiotic, and I asked to add an oral antipseudomonal, but she would not. Finished the 28 day cycle, and a week later my daughter has a raging lung infection and now pneumonia. I asked the doctor again to prescribe the oral antipseudomonal. Again she said no, and just told us to start another 28 days of inhaled antibiotic. We were told the oral antibiotic does not make a difference by a new doctor fresh out of her fellowship and entirely too conservative with treatments. I have read the research and early erradication of pseudo will give my daughter the best survival options. This is really starting to tick me off because I want a more aggressive approach, and she is being too conservative IMHO. Ive talked to hundreds of patients and most who were treated with an inhaled antibiotic alone are now colonized with PA. Although they all still speak strongly that the inhaled is the only answer. ummm ok. I dont agree and I do not follow status quo. Research study being guidelines. We need to treat patients like individuals, but I am looking for any additional advice to back up my findings.
R709X and V4SEA?
Is there any known info about the V4SEA mutation along with R709X?
Are swimming pools an unnecessary risk after all?
Dear ECORN Experts, It seems to be a common view that swimming in well maintained indoor pools is safe for people with CF but I'm starting to wonder if this really is so? I have discontinued my son's swimming lessons because he regularly had both staph and fungal infections in his upper airways. During the summer breaks, when he would only swim in a lake, the infections went away, but returned as soon the indoor swimming lessons started. The swimming pool is a modern reputable pool. Incidentally, I've also read that Sydney's newest swimming complex was closed down for an extended period late last year because of hard to treat pseudomonas outbreak. I also read an article about a young girl with CF in Sweden who is a champion swimmer but who was on the lung transplant list because of chronic PA - her twin brother with CF was fine. All of this makes me wonder if indoor swimming pools are worth the risk for people with CF after all? Whether a pool is well maintained is something that is very hard to acertain. There other as effective and safer forms of excercise such as running.
G542x and another mutation
Hello, I just have a question of my daughters mutations (G542X and c.1210-2A>C). I'm in the states with no answers from anyone here. They said no one else has her two combined but she will eventually have lung disease! She has been diagnosed with cf but has no lung issues at all just gi issues. But also have her on hypertonic saline and albuteral for preventative treatment, how long do we do this to prevent lung problems that are not there? My grandmother also had these gi issues but no one is concerned with her history. Any answers or advice would be great thanks.
Move to France from UK with 2 and 1/2 yr old with CF
My son has CF, with two copies of delta508. He has excellent health care in the UK and remains well, despite culturing pseudomona 3 times in his first 18 months. Now my husband has had a good job offer in the South of France and wants us all to go. What would our position be with regard to healthcare? Is there any national health care available to us as EU citizens? Would there be any English speaking health care available? How does the CF care compare with that in the UK? We currently have joint care between Eastbourne General and a team at Kings College London.
Sinus pulsating aërosolsystem
Are there clinical studies about using the pari-sinus bij CF with principally sinusitisproblems? Is there somebody with experience with the pari-sinus?
Rare CF mutation risks?
What is the risk for a white British male having a rare mutated CF gene? The 50 most common have been tested for and have come back as clear for mutations. I have recently been found to be a carrier of a common mutation following blood tests after my baby was diagnosed as having an echogenic bowel at 20 weeks gestation. As a result my baby has been given a 1/20 chance of having CF. My partner's blood sample is being further tested for rarer mutations. I would like an idea of how likely it is my partner is a carrier of a rare mutation. If my baby's echogenic bowel is gone at our next scan will his risk of having CF decrease also or stay at 1/20 because it was seen at 20 weeks?
Rare CF mutations
What percentage of the UK population carries a rare mutation for cystic fibrosis (excluding the 50 most commonly found mutations)?
Why does my son get sickly pale in the face for periods of several weeks?
My 11-year-old son, who has CF, becomes from time to time sickly pale in the face and the pallour can last several weeks. He also gets dark circles under his eyes. This happens maybe once in a year or two years. The symptoms gradually vanish. I've googled this in various CF forums and noticed that others also have these symptoms but I could not find any explanation for their cause. My son's lung function is good, his weight is normal and he has no vitamin deficiencies. These episodes do not seem to be related to anything respiratory, but they are worrying because he looks quite unwell. Is it possible to explain what causes these symptoms? It would be great if there was a way to treat or prevent them. Thank you for your help.
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