My Moments to Breathe

Tuesday, November 5, 2013

The mind games

The dreams are starting to become a bi-weekly thing. I guess this transplant process is taking a bigger toll on me than I thought. Last night I even had one of those dreams you swear is real. I just want my phone to ring and the word LUNGS!! to come up again. 

I can tell you all that I really did think by now that I would have my new lungs and fighting hard to be ready for the upcoming holidays. I thought for sure I was going to go back to MI for Dave and Trishs wedding. I thought for sure I was going to go back for Christmas. Now I am just praying that Christmas will come this way this year, just like Thanksgiving is. 

I just don't think people understand how this whole process plays tricks on your mind...especially when you had a set and they weren't perfect. I would have been healed and on the road to a wonderful recovery and been gearing up for everything PLUS being able to breathe, sleep, walk, smile bigger, etc. Mind games for sure equal hard days with many tears. Poor Jeremy gets the brunt of it. What would it like to be able to do things and breathe better than I am?

I  still forget how sick I really am. I wonder if I need to give in more and just decide that this is the life I have right now, dying. Should I surrender a little more, sit in the hospital more, realize that, yes, indeed my lungs HURT when I breathe? My lung function is not good, do I say I am ready for oxygen 24/7? A wheelchair when I go out for long spurts? Not going out without someone besides Laila with me? MIND GAMES.

I want to be the healthy girl that is so stuck inside ready to burst out every minute of the day. I want all this to go away. Just go away. I want the stress of it all GONE, the worry GONE, the sickness GONE, the fear GONE, the tears GONE, the dying GONE. Gone, gone, GONE! Just gone. More MIND GAMES.

What if I am one of many that I have heard about lately that have died while waiting for a shiny new pair of beautiful, well working, air goes in and out effortlessly, lungs. How can I do that? How can Laila be OK during and after that? How can Jer? How can my mom and dad? My family? Heck, How can I be OK with it...I am so scared. And knowing if that happens, I will just put a brave face on and look death straight in the eyes. Like I said not that I am worried about death, because I know for me it will be a gift of heaven and my saviors healing arms. But to watch everyone watch my die, and to make sure Laila learns as much as she can from me during that time is terrifying. To say goodbye and watch the hurt,  blah. No words for these MIND GAMES.

Praying for that call as hard and often as I can. Please Lord...please. 


  1. :( My heart is with you on ALL of that, dear Cassie. We keep on begging God with you. HOW LONG, Oh, LORD, how long? Read Psalms today. I will think of you and pray when I do, too. May God send PEACE to trump the mind games. Hugs and love from all of us.

  2. God be with you, sweetie! My prayers will join with the prayers of many, many others! Storming the Throne of God for you, Cassie!

  3. Dear sweet Cassie,

    I'm not even sure how I came across your blog, somewhere on FB. I wanted to reach out to you because from what I've read so far, our stories are so similar. I am 34 yr. old w/ cf and underwent a double lung/heart transplant about 20 months ago. I was able to have a baby and he is six now and the joy of my life. Before tx, my lung function was 15% and I was on O2 24/7. I waited for 5 months for my organs and was running out of time. I felt many of the feelings you have expressed.

    Don't lose hope or faith. I received my miracle and you will too. My life is completely different now. I work out almost every single day. I recently did the 32 mile bike ride for the CF foundations Cycle for Life. I can give my son piggy back rides when we are on family hikes and he gets tired, I can chase him up the stairs, I can sing to him without losing my breath. I can actually belly laugh again without turning blue! When I was waiting, I kept thinking of my donor and their family and how they needed more time to be with their loved ones before they passes and it helped me keep things in perspective and stay patient and peaceful. This is in the Lord's hands and you are a fighter. I am praying for you and your family. If you have any questions at all, please let me know! God Bless!! Love, Sharlie P.S. you can check out our FB page, Sharlie's Angels. My husband updated everyone during my tx and it might be interesting for you to read. Also, my website will direct you to my blog. I haven't blogged for a long time (having too much fun LIVING!) but, I blogged while I was waiting.

    1. Sharlie

      Thank you SO much for the little story!! Makes me happy to hear you are doing so well and love to think that the donor and his/her loved ones need to be together a little longer...will for sure think of it that way now. THANK YOU!