Most may know me from other lists and whatnot ,but my name is Becki. I just turned 28 March 5th. Something I would never have seen without the gift of new lungs a year and a half ago at then Mayo clinic in Jacksonville, Fla.
I have a weird case b/c although I have all the issues associated with CF such as Lung infections that caused severe damage resulting in a double lung transplant, major pancreatic insuffiency ( DX as a kid with a 72 hour fecal fat and then a few months back with an MRI and some pancreatic stimulation test. It showed my pancrease was severely atrophied and scarred so that all that was really left of the organ was 20%. The rest has been replaced with fat.
I am also diabetic and I have sinus issues.
Anyways, I had Ambry do the gentic screen on me and it ened up being M470V/M470V and also 7T/7T.
I know that they aren't sure if this is CF causing but most articles just mention patients with one M470V or one 7T...not two of both.
I was checked for Ciliary issues and that was normal. When my GI doc,who specializes in GI issues in CF adults,asked Mayo in Rochester to look at my old lungs again. They said it could be atypical cf.
I know it showed chronic bronchiolitis,emphazema,scarring,bronchiectasis, consolidations in most lobes, chronic pneumoninitis (sp ? )
Anyways, I take 10 enzymes with meals and snacks. I also have a feeding tube b/c of the gastroparesis ( it was surgically corrected somewhat ) and now chronic pancreatitis.
I was wondering, how many here have the same issues associated with M470V/M470V and 7T/7T. Not just one of each but 2 of each ? I think I saw someone post that their child had these results....
Post Edited By Moderator (Admin) : 3/14/2006 9:51:16 AM (GMT-7)