Guest guest Posted October 27, 2007 Report Share Posted October 27, 2007 Subject: My introduction...I have CF and an ILD Hi My name is Becki. I want everyone to introduce themselves to everyone with their stories.Chronic Pancreatitis,yada,yada,yada.I am 3 yrs out of TX.I also had an interstitial lung disease that made things worse.I was full of infection and secretions plus I had no reserve volumn or FVC or Total Lung Copacity. My FEV1 at Transplant was 10% and on 15L.Not good.I was also asthmatic. I have a feeding tube. A GJ tube and use the new ZYVEX machine ....its the size of your hand.I am using Perative.Its already broken down.So my pancreas doesn't have to work so hard. I also have chronic rejection but its not too bad.....Bronchiolitis Obliterans. Or BO. We have some pics in the pics section.Plus some links and info. We also have a camp for kids and teens with CF and similar disorders like ILD's and Bronchiectasis as well as severe nebulizer dependant ( at least once a day ) asthmatics.It's a great experience for them ! ! ! ! Its in TN but has free air travel! ! ! Sincerely, R. Snyder Director 29 year old w/ CF, Chronic Pancreatitis, Diabetes, Double Lung Transplant '04, GJ Tube YOUNGLUNG Suppport Services, Inc. www.younglung.org YOUNGLUNG E-GROUP http://health.groups.yahoo.com/group/YOUNGLUNG/ Quote Link to comment Share on other sites More sharing options...
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