It's getting harder for me to actually remember what my life was like before my donor & amazing doctors & surgeons gave me a life that is CF free. I don't want to ever forget so that I never take my life for granted. I found a post that I actually wrote almost exactly one year ago that reflects on a day in my life before my transplant.
"IT'S OKAY TO CRY"
I shut the door so I can be alone. . .although I am never alone. I have a constant companion that is my source of life. I stand in front of the mirror and see me the way everyone else does. A very sick young woman. I see the oxygen tubing which I hate but I am thankful for because it is my constant companion, my source of life. I take all my clothes off, I see my naked, weakened body which fights to keep from becoming tiny and frail. I can count the bumps on my spine along with every rib. My back is rounded and my shoulders are thrown forward as I desperately struggle for relief as I take in shallow breaths.
I draw a hot bath. I don't know why, but submerging myself in my tub is comforting and gives my aching body some relief. This is when I can take off the mask. I can be alone with my reality. I can break down and no one is burdened by it. I set my CD player on 'repeat' and I push play. I find peace and comfort in listening to one song over, and over, and over again. "Don't give up, because you are loved. . ."
Tears fall into the water and disappear leaving no evidence that my pain has become more than I can bare. The music disguises my weeping. I don't have to be strong for anyone at this moment and it is a good thing, because I have no more strength to give. My world is crashing in around me. . .I cannot bare it alone. I have faith that I am never alone.
The water is no longer warm, my skin is soft and waterlogged. I don't want this moment to be over. I don't want to face the outside world. I am not ready. My head is pounding, my heart is racing as I towel dry my body. I cannot hold it back, I am forced to cough so hard that the veins in my hands, legs and feet feel like they will explode. I cannot draw air back into my lungs. Terror. Fear. I do not want to die like this. I do not want to die alone. As I begin to black out, somehow I find the strength to finally fill my lungs with air. I sit down. I begin to recover. . . I hear the words to my music still playing over and over. "Don't give up, because you are loved"
I bring myself to finish getting ready. I blow dry my hair. I cough some more. I don't bother putting make up on because I barely have enough energy to dress myself. As I slowly put my clothes on I shed a few more tears. I know my body cannot endure many more days like this. I rest. Simple things are very difficult. My heart rate is high. My heartbeat is thumping so loud in my head and it feels as though it wants to jump out of my chest.
I open the door. I am ready for another day. I am happy I am alive. Knowing my body should not be capable of doing the things I push it to do. . .I smile. I smile because I won't give up and I know I am loved.
This was a day in my life pre lung transplant. CF needs to be stopped. I hope some day CF does stand for Cure Found!!
Original post date August 11, 2010
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