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  1. L

    Can an adult have cystic fibrosis without knowing it already?

    Just an FYI, there is something called non-CF bronchiecetaisis (sp).You could have many symptoms similar to CF and not have CF. Regarding those who think their father had similar symptoms....98% of males with cystic fibrosis are infertile.
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    Liver Transplant before Lung Transplant?

    I know 2 people who had liver transplants. One a few years before she gotlungs, the other got her liver as a teen and now is undergoing a work up for lung transplant. It must be not necessary to get the organs from the same donor. Maybe related, we also know people who got lung transplant then...
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    Low Ferritin and Iron Levels- is this common with CF?

    Iron deficiency is not uncommon in CF. Anemia of chronic disease (anemia of chronic inflammation) may limit how well your anemia will resolve with iron therapy(you can remain anemic due to chronic inflammation despite correction of iron deficiency. Some people with CF do better with iron...
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    Question about order

    Nope, nope, Nope. this is the scoop. I have a hand out from the clinic we go to that is from the foundation called "suggested order of therapies for daily care" here you go: broncodilator hypertonic saline mucolytic - pulmozyme or mucomyst airway clearance - vest or acapella or PEP or...
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    My Alex

    I am so sorry Heather, I cannot imagine your grief. I am so sorry for your loss. About Alex's meds...the only thing that needs really special attention is any controlled substance like certain pain meds or certain ADHD meds, etc - bundle these up and take them back to the pharmacy. Explain...
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    Mucus in urine

    Printer - Thank you for your personal reply. I do not follow you specifically although, I notice you do reply to quite a few posts. Your willingness to help and provide insight is very nice, very kind. However, even though you know CF researchers by first name and even though they have said...
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    Mucus in urine

    I confess to being a nurse but not a CF nurse. I like to think of myself as well educated and willing to stay up to date. yes, the colon produces mucus - CF docs are concerned about people swallowing mucus because it can cause nausea and vomiting and it is infected The mucus in your...
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    Mass general adult clinic

    No problem. They have a FB group - it is a closed group so that the "conversations" are private, the FB page is Adult Cystic Fibrosis Program at Massachusetts General Hospital. You can ask to join the group and speak to other/current patients there.
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    scared - newly found out i had 2 CFTR mutations

    it is possible to have bronchiectasis and not have CF Since your sweat tests were so low, it is unlikely (but not impossible) that you have CF. to have CF you have to get one CF gene from each of your parents. You have 2 mutations but they could...
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    Mucus in urine

    CF affects all epithelial cells, including those that line the genitourinary tract which is where the urethra is (not the gastrointestinal tract). Similar to what happens in the lung, the alterations from abnormal CFTR cause mucus to be thick and viscous and dysfunctional. This impact happens...
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    Mass general adult clinic

    Dr. Sicilian has cut back but he no longer has to take a turn doing consults and covering things like the Fellows clinic or the MICU so he actually has more time slots available. The NP retired a while ago at the same time as there were some hospital cut-backs - they are recruiting for a...
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    Anyone have any insight into these findings?

    Hi Jenn, There are almost 1500 mutations identified that cause CF. The test used for your child only tested for the most common 32. Because of your child's symptoms and findings (Pseudomonas) you should, as DanformIL suggested, find a CF center for testing and follow-up. In addition to a more...
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    Any ideas?

    Grrr to the GI doc - he needs to think outside the box... Hi, I would pose this to the GI doc: A concentration in the formula (like 25 - 50%) will not cause dehydration if you make sure you are providing adequate free water from flushes and orally. There are formulas called 2 cal (the...
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    Any ideas?

    A few thoughts.... Hi, this is my third go at reply....lost my first and second - I am a newbie here. Let me add my sympathy, I "hear" your frustration. You are smart to ask for ideas/help. A couple of things: 1) Neocate is for infants and I am 100% certain that your dietitian is familiar...