Guest guest Posted May 15, 2009 Report Share Posted May 15, 2009 , a 4 year Double Lung Recipient (Cystic Fibrosis), was this month’s Guest of our local Lung Support Group. She’s a former member, married, now 50 & her only ‘miracle’ daughter is now 9/10 years old. She gave very openly of her experience & talked a lot about the implications for her young child. We saw lots of photos of the family as they went through this journey. As said, her little girl never knew what it was like to have a mum who could ‘join in’ normal life until after the operation. Her closing comment was that people needed to see & hear the good outcomes…she hasn’t had a smooth journey by any means but she is now travelling really well. An interesting complication for her was that last year she experienced multiple lung infections after having had no trouble for the first 2 years…they finally decided that GERD was the culprit & performed lap band surgery to make it impossible for the reflux to travel up & then down into her new lungs. So far so good…problem solved. She was interested to hear of its possible involvement in causing PF. Another thing she mentioned was that with a double lung transplant there wasn’t huge discomfort at the wound site because there isn’t much muscle there. She experienced more pain in the muscles of her upper back from the ‘spreading’ of the rib cage. She was very surprised at this. As we have heard from our Recipients a single lung job is a totally different surgery. in Oz IPF: Fibrotic NSIP/UIP ?? Reynauds' May 2007 Quote Link to comment Share on other sites More sharing options...
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