• LittleLab4CF's Avatar
    06-15-2018, 02:04 AM
    LittleLab4CF replied to a thread Question about order in Adults
    I'm not going to be able to answer your question about Xopenex. I did a "Search" of Xopenex and there are in excess of 500 references in over 500...
    11 replies | 1711 view(s)
  • LittleLab4CF's Avatar
    05-27-2018, 07:44 PM
    It's tough to find the best way to deflect that question, "what do you do?". Our self esteem and identity are tied to that very big question. Until...
    2 replies | 639 view(s)
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    I was reading a post on DIOS from April and your comments on pancreatitis/mucus barrier. I find your posts informative, so I thought Iíd ask your opinion. My daughter is in a constant state of some form of pancreatic pain. Docs donít take it seriously, since her lipase is only slightly increased. Last week, after an ER visit, I read an article about slightly elevated lipase being used as a cf diagnostic tool with marginal or low sweat chloride results. I was wondering if you ever find this to be true. In chronic pancreatitis, are the enzyme levels ever crazy high? She never tests that high, but they do get elevated. She has one mutation, and the 5T/12TG variant, which ambry says are both pathogenic. Jewish says that she has cf related disease, donít treat her for cf, but monitor her annually. How can we manage what she has going on? I see you have small duct disease, how small is your pancreatic duct? Hers is 0.5 mm. Any insight on this would be appreciated. We are in Longmont
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    Hey, my name is Jake Sperry. I am a 41 yr old CFer living in Durango. Thought I would give you a shout out. If your ever in this part of CO, hit me up.
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About LittleLab4CF

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67yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism established to be virulent. Classification review in 2017 remains CF diagnosis.

Complete pancreatic atrophy, Bronchiectasis, MRSA, osteoporosis, small duct disease, charming personality.

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