Miami

Tomorrow, as long as my flight gets out (fingers crossed), I will be going on likely my last trip for awhile. About three months after my first transplant my mom and some friends and family and myself all went to Miami, because we all, mostly my mom, needed a break! I fell in love with it there, but I know it's not for everyone. Hopefully there is not a ton of walking from here there and everywhere involved, but we have a rental car so driving is always an option. One of the things that gets to me most about being "sick" again is people have to wait up for me. I really really really loathe it. I know people probably don't care, and it's not as much of a bother as I think it is. But I guess I looked at it like people must really get annoyed to constantly be waiting and walking slowly for me, or having to take a cab instead of being able to walk a few blocks. I was in Cancun last week and I had to have someone else wheel my luggage and that made me really sink inside. I just want to be able to do the small stuff like that again on my own. Soon.

xo

I have found I am pretty awful at keeping up a blog. I mean to post all the time and for some reasons the words never come to paper. I am going to be better at this I swear. So in my last post I rambled a little bit about facing another lung transplant. A lot has happened since then. I faced reality and now understand if I don't get new lungs, well, I would die and I am not ready for that yet. I still need to take that trip to Africa. There is so much to do and so much I meant to do the last time I got new lungs, that I never achieved, like writing a book! So I need a third shot at a life, a second shot just wasn't enough for me. I have completed all the testing to get listed again, and feel I am declining enough (lung function is now around 40%) that shortly it will be time to go back on the list. I so crave breathing normally again, now that I know what it is like, that it trumps most of the fears I have about going through this again. I want so badly to just do normal things again and not be winded, or left behind, or need other people to help me do things that I don't think I am as terrified as I was the first time around, with those lungs all I knew was crappy, so I wasn't sure the amazing life I was going to get after. I am going to just tell most of you reading this, you take breathing for granted, trust me. I am at a point where I feel and think about ever breath I take again, like I did with my old lungs. And it sucks! People that breathe normally really don't understand how blessed you are to be able to do that. Trust me, even I took breathing for granted when I got these lungs.

So, I am doing less and less, as normal everyday things get harder, so this blog will also chronicle something I love and will still be able to do, cook! There will be a lot of cooking and recipes that I try to keep busy and keep my mind going. Speaking of which, I am going to Miami this weekend for the Food Network's Wine and Food Fest, and it will likely be the last thing I get to do before I go back on the list and am grounded. I should have lots of great comments and pictures about this weekend. I loveeeeee food!

I hope you will follow me through this journey and that I can help guide those also waiting for new lungs. With my first pair I said I would do it all over again if I had to, and I guess that is exactly what I am doing.....

xo

I swear I have been here before, this breathlessness. I remember it vividly, not from a dream, but from the first time. I remember how I felt like I was drowning and dying for months before I had my first lung transplant almost six years ago. It has hit me again, how it feels to concentrate on each breath, to feel it coming into your lungs, only to feel that it can't go everywhere you want - the scar tissue inside from acute and chronic rejection is stopping it. I didn't think I would be here again. Call it naive, call it wishful thinking, whatever you'd like. The first time I had to think I could get ten years from a set of transplanted lungs to mentally get myself to do it. I am at six years, and again I am staring the question in the face: are you going to allow yourself to go through the process again, and get new, I guess re re transplanted lungs? The question is more difficult this time, the situation is much harder this time, because I know what I will have to go through, it's not a surprise. And I know what it is to never think about breathing, so being breathless is even more shocking and less tolerable now. I know how terrifying and painful the process is. I know how hard it is, unlike anything else. And I don't have my life support with me anymore, my mom - who I lost to breast cancer about 2 years ago. What would she be thinking right now, if she were watching me? Would she want me to get new lungs? Would she understand if I didn't want to go through it again? Would she call me crazy for even thinking twice about it? I don't know. But I need an outlet, and more than anything I will need support, I will need a trillion times more support than last time, to even get near what I got from my mother. And I want to keep you updated as I go through this process, or as I don't go through the process....so here you can find my daily thoughts about again being in this place that I call a limbo - between living and dying, and maybe you will see some fun things too, like my failed cooking expeditions....

xo