Thursday, January 3, 2013

One Fallen

I never want to be the person who focuses on the negative. I like to be the positive, optimistic and happy person that I am. I don't enjoy bad news, and in fact, would love to bury myself under the covers, hiding away where it can't find me. 

But the fact is, transplant is scary. I've never been scared before. CF didn't scare me, transplant didn't scare me. I pretty much felt immortal. Doesn't make sense, but that's what it was.

Post-transplant is a whole new world. I feel as though I've woken and I've been shoved (willingly, yes) into this new life of 'what-if's' and 'be carefuls'.

There is so much unknown, so much can happen. I no longer have Cystic Fibrosis in my lungs...however it is still in the rest of my body. What has essentially happened, is that I've traded one lung situation for another.

Being a transplant recipient, you are immuno-suppressed. This means that your immune system is compromised and you can easily pick up anything going with little to fight it with. Pre-transplant I didn't worry about germs, bacteria, etc. I didn't shy away from those with colds or other bugs, as believe it or not, I didn't get those "normal people sicknesses". (Instead I went straight to pneumonia or another lung infection.)

Now, life is 100% different.

I will be the same Jess. I will laugh at myself, and you...always you. I will constantly talk myself happy. I will continue to focus on the good, the fact that I have been given the gift of extended life, the fact that I have an unwavering support system, the fact that I am the luckiest person in the world because all of you. The fact that I am being followed by the best medical team in the world for lung transplants.

However, I WILL be scared. I WILL be cautious. And I WILL NEVER forget that this gift is both truly precious and precarious.

Not everyone makes it out okay. Not everyone is saved. That is the gamble. Transplant comes with risks; if it was perfect, there would be no questions and no fear. 

I woke this morning to some horribly sad news. It's not supposed to work like this. This is not supposed to be the outcome.

Please pray, send positive energy & thoughts or whatever you can do in your own way to this family.

Or copy and paste this into your address bar:

Kelly had Cystic Fibrosis, and like me, waited for a life-saving double-lung transplant. She was a fellow blogger and I've followed her wait for lungs while waiting for my own.

Kelly went into surgery on December 6th; one week prior to my own. Kelly did wake up post-transplant and therefore did have some special moments with her loved ones, but unfortunately her health took a turn for the worse.

Kelly had complications immediately and fought long and hard to live. I took comfort in reading her blog, as our stories were so similar. Cystics have a kind of bond that can't be explained. I felt like we were waiting together and I always opened her blog with anticipation that she had received her call.

I am determined more than ever to live life large and go at it with abandon. I will live for the both of us.

Kelly will never get to breathe, stand up, walk around, play, laugh, sing, dance or do any other number of truly amazing things with her new lungs. She will never experience life while breathing easy, she never got the chance to meet her new lungs and put them to work.

I can do that for her.

I never met her, but I believe that doesn't matter. I will treat mine as though they are also hers; as though she is living right beside me. I will give her each experience, let her feel what I feel and breathe the way I can now.

Each day with these new lungs is supernatural. Every step forward a revelation. Now, I won't be alone on that journey.

I will never stop advocating for both Cystic Fibrosis & Organ Donation. I warn you now - it is my life's mission. CF takes too many lives. Organ donation saves lives. It's simple. I ask you to join me.

Don't stop the conversation.
Spread the word.
Don't be afraid.
Be proud.

Thank you for reading. Thank you for considering joining me in my advocacy. Thank you for making me less scared.

Love Jess

No comments:

Post a Comment