Yes, I made it one year from my double lung transplant on 08/08/2009! It's been a tough battle but things have improved and I am getting to do more stuff. I can drive now that I'm off my pain patch! Went swimming at the beach since my j-tube hole has closed, even though it is indented looking like a second bellybutton.
I had 1 day of a bunch of tests at TGH and the next day they did a bronch and lung biopsy. No rejection still! So they lowered my Prograff to 5mg, yippee! Bloodwork came back good, heart is good, bone density is slightly worse. Still waiting on cultures. They got a lot of junk out of my lungs which I knew was in there b/c my FEV1 had been going down...10% in 2 months! My breathing wasn't as well. At least this time, there was no brown junk in my lungs...it was white! So I guess that's an improvement. The docs think that it might be food backing up from the Nissen wrap being too tight but the GI docs don't think it's that. The Lung TX docs got me to meet with the GI doctor that would do the wrap dialation and the surgeon who did it to tell him how much to dialate it. Of course, they made me go through another round of barium swallow testing first. FINALLY, they decided that it was time to do something about it so I'm going in Aug.30th to get an EGD with dialation of my esphogus where the wrap is! I really hope this will improve my junky lung problem too! They are only going to do it a tiny bit b/c the GI surgeon would rather them have to do it 2 times than do it too much the first time and have to go in and surgically repair it. At least this will be out-patient! Let you know how it turns out.
