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Thursday, May 3, 2012

Sad, Late Night Rant

So I sat down tonight with Cameron and tried to watch 65_RedRoses. Yeah... that didn't happen. I got all of 5 minutes into the film and couldn't stop sobbing. Cameron wasn't far behind me.

Yes, watching the film was hard. Actually, Cameron was the first one to say "well, that doesn't bring back all sorts of horrible memories" when Eva was coughing so hard that she couldn't breathe in the opening segment. But it wasn't that part that made me cry so hard. It's the plain fact that I miss her. I miss all of my CF friends who are no longer with me.

This is the reason I stayed away from support groups for so many years. I know the truth behind this disease. I know that the odds are not in our favor, that most of us will die way before our time. Even the transplant doesn't "cure" us. I learned that I had lost an online friend today. She had her transplant already, but was experiencing chronic rejection. It's the most horrible word I think they can tell us post transplant.


 A few weeks ago, I have having some major shortness of breath when I did things. It scared the shit out of me. There were moments that I just couldn't think right, and when I told my professors that I may have to go up to Cleveland to get checked out, they were fine... but I wasn't OK with that. I haven't missed a full school day yet. I don't plan on missing one. That's why I got this transplant - to finish school without missing a ton and to get a job and LIVE MY LIFE. But by getting short of breath while I was outside doing yard work, I had a moment of panic. That it was all going to go away. That I was rejecting... Turned out, I was freaking out over nothing. Looks like I've developed mild asthma, which I can deal with. But the panicking over the "unknown", boy, that just isn't for me anymore!

 So... back to the support groups and Eva. I only talked to Eva a couple times. I can't technically say that we were friends. She probably didn't even know that I truly existed. But to me, someone who was getting ready to have a double lung transplant, seeing her and reading about her was my lifeline. I clung to the fact that she made it to the other side. About a year after my transplant, while she was waiting for her second transplant, she passed away. Her death hit me as hard as Danny's death did. They were a couple of the people that I used to force myself to go through a surgery that I wasn't sure I wanted until about a month before I had it. They reminded me that I could be "ME" again, not just a bunch of tubes and a girl that was so dependent on everyone else. That I could actually LIVE. I could go anywhere and do almost anything I wanted to do. I could go back to school... Get married... Get a job... Have a family... All things that I'm accomplishing today.

Not married yet, but will be soon. Don't have a family in the traditional sense, but have 2 wonderful dog babies and plan to start the adoption process as soon as possible.

 It's just... somedays it's hard to keep putting one foot in front of the other, when you feel like you are surrounded by Death. That they are taking all of your friends away. And the scariest thought of all... that you may be next.

 But most days, I wake up just fine. I am excited (to a certain extent) to be going to class, or spending time with the ones I love. I look forward to August when I'll officially have my bachelor's degree. I try to remind myself that today, I am healthy. And then I try not to think too far in the future or too hard about everything else. I am blessed for today. I am one lucky girl who got a second birthday to finish all of the things I didn't think would happen when I was waiting for my transplant. And, I'd like to think that maybe... just maybe... I am the one that someone waiting for their transplant has held on to, to keep them going, keep them dreaming of what life will be like when you don't have to fight for air.

 I will say one final thing: When you don't have to fight for every breath, that first year post transplant is magical. It may be hard as hell, but it's something that I'd go through all over again if I had to.