Having a transplant changes everything ...
One often forgets the "bad" things that CF brought to your life. Fortunately it's easy to forget the trouble breathing, struggling for air, coughing day and night, coughing until you loose your breath, etc ... that's until you're reminded of it again.
I often read about and follow other CFer's who are waiting for transplant, and remember the agonizing wait, the nights spent praying that "the call" would come, and the realization that life was ending. The problem with reading about this, is that it often times is quickly forgotten.
As the old saying goes ... " a picture is worth a thousand words". It wasn't until tonight when I saw one of Eva's videos, that my old CF life came roaring back ...
nights like these from Eva Dien on Vimeo.
As easy as it is to forget or block out the painful things in life sometimes, just one little glimpse of what reality use to be like, brings one right back ...
After watching this video, I remember myself in the same situation ... gasping for breath, wanting to be "normal", being frustrated to no end ... and it's scary! Unfortunately, Eva didn't have the opportunity to live her life over for the third time, but I thank her tremendously for being tough enough and having the compassion to record her most trying times. Most of us with CF have been there, or are there now.
Our looks can be so deceiving ... until we're laden with the oxygen tank, or until someone hears us coughing or trying to catch our breath. CFer's usually "look" healthy ... and we CAN put on a great facade! But remember, looks can be deceiving!
4 comments:
As someone who hasn't had a transplant yet, I am very happy to hear they you get to a point where you can forget. I'm glad you're able to breathe well enough now that you can forget!
Stacey @ www.confessionscyster.blogspot.com
Wow well said! I know before I was saddled up with my o2 tank people would just say ohh thats a nasty cold you have. Day in and day out it gets frustrating explaining the reason why you have the cough and how you actually feel. Since being listed I have actually had a few people that were in school with me years ago say "wow I didnt know you had CF" Because just like you said we look normal on the outside.
I'm only just developing a "CF" cough... before, it was pretty much non-existent. But I am 30. And up to this point, CF hasn't affected me all that badly. For that I am grateful. But now comes some scary realizations... One night recently I was gasping, lips turning blue, could NOT get any air. It was FRIGHTENING. I was in so much pain. I am really motivated to take better care of myself and I am really inspired by your story Kelly. Love yah!!
Kelly thank you so much for this post - it really is true and it is very meaningful. I had my follow up at the UPenn transplant center yesterday and it looks like things are going to start rolling along soon - I should be listed in the next couple of months and the doc said that I won't have to wait more than 12 months. Just the thought of being able to breathe again makes my eyes tear. Thanks for the post.
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