I was transplanted May 2 2007. I did relatively well until about July of 2005 - I had maintained an FEV1 of roughly 40-45%. I had a partial lung collapse and ended up dropping about 10-12% FEV1 almost over night. I was never able to really recover from that even once the lung was reexpanded. I tried some alternative therapies and tried exercising but just couldn't get better.
I got sick in May 2006 - lost about 10 lbs (at the time I was only about 110 to begin with and 5'7") ended up in the hospital and then on home IVs for about 2 weeks. I asked the doc for longer IV treatment because I just didn't feel better at all and he refused and told me I was fine. I couldn't do anything about it at the time, so I went with it. I went back to him a month later - still hacking and coughing and asked about transplant. I asked when it was going to be time for us to look into that as a method of treatment. He told me not for a few years. My gut told me in a few years I would be dead, so I sought a new doc for a second opinion. I went to another doc and basically got the well there is nothing we can do to help you line - no recomendation for transplant nothing (UF Shands by the way). Then I sought a third opinion cause at the very least I wanted to be evaluated by a transplant center and be told by THEM that I didn't need it.
I went for my third opinion and was told that I needed to be evaluated soon. They set up my appointments the first week of Dec last year and I was told I definitely needed to get the ball rolling. I had my eval in Feb was listed by March 14th, 2007 and was transplanted on May 2, 2007. I am just about 6.5 months out and I am doing fantastic.
I have had few issues to date. The only lung issue I have had was a bit of scar tissue about a month out of my surgery that had to be removed from my bronchi where the sutures are. I also had to have a small pig tail chest tube inserted before I was sent home from the hospital because I had a small air pocket that wasn't defusing on its own. I have had some side effects from the meds, but they are tolerable and I have found ways to deal with them (most without taking more meds - though I have had to start taking blood pressure meds because of the prograf).
All in all things are going GREAT! and I couldn't have asked for better.
I am thrilled that you are doing well and will say that I didn't talk to you much at all before your transplant, but I am kind of glad that you have been too busy to come around - that means that you have been feeling well and been out and about living life.
Hope things continue to go great for you.
Linds