Friday, June 18, 2010

Be thankful for breathing

There are two parts to this blog: breathing and butter.  I have sort of steered clear of the breathing part, because I think it's really hard for me to open up about that, but one of the reasons I started this blog was to have a place to open up about that and I place to find support in my second transplant process.  If I want that I need to start blogging about it and sharing this experience with you all.  So let's recap: I had a lung transplant 6.5 years ago, due to end stage cystic fibrosis.  I was diagnosed with chronic rejection in my transplanted lungs awhile ago, maybe a little more than a year ago.  This basically means my body does not want these lungs anymore, and because of this they are slowly turning to scar tissue.  My airways are slowly become scarred and making it harder and harder for me to breathe.  The only way to solve this problem is another transplant.  A few months ago I completed all the testing to get back on the list.  I am not back on the list yet, but I get closer and closer to that point as time goes on.  Right now I have 38% of my lung function left.  This is really starting to make life harder for me.  Doing pretty simple things take a lot more effort and because of the build up of more and more scar tissue I am starting to cough more and more when I do things.  And because my lungs are literally using up every calorie I take in to just function I'm down to 83 lbs.  I have to explain that this time around is much harder physically than the first transplant, because now I know what it is like to go through a day, and do anything I want and not think about breathing.  I never knew that with my old lungs so that made it a lot easier.  I think it's really important during the process for me to explain to all of you readers how lucky you are to literally do the simplest of things: wake up, take a shower, go to work, run errands, literally mindless things and not ever once think about your breathing.  I'm conscious and aware of my lungs pretty much with everything I do now.  Most people really take breathing for granted, and I want you all not to do that.  I want you all to realize how blessed you are to go through a day and not give it a second thought.  This is really important to me for all of you to know that.  I know even when I got these lungs I took for granted how easy it was to breathe and I lived for nineteen years being aware of every breath, so trust me I know how easy it is to take healthy lungs for granted....but for me, please don't!  


  1. I remember after I moved in with you, we were in the car and had to stop somewhere. I waited in the car and you went to get whatever it was you needed to get. As you were coming back, I saw you running to the car (and I think it was cold out). I remember saying to you WOW you just ran back here in the cold. And even you didn't realize you were doing it. It was the first time I really noticed a big change in how you were breathing and living. But on the other hand, I remember being with you and Jess at lunch and we would start laughing about something...but you would start coughing. That was the first time I really realized how hard it was for you to breathe before your transplant. Even laughing was too much for your lungs. :( So I have seen both sides, and I will be here through this whole process to see you on the other side again :) ILYTM

  2. Oh man this made me cry, hahaha, thanks!!! But in all seriousness thank you for this comment and remembering those things :) ilytm