My Moments to Breathe

Saturday, January 26, 2013


Here I am again in D6/5 again. Is it odd that nurses start remembering you so much and know what needs to be done before they even look at the orders. Oh well, at least this way I have a good name...mostly because of the curly haired baby that sits beside me most of the stay. 

Now I am not as sick as I should be. Why, not sure, I guess with most CF learn to be sick and deal with the new challenges that come with it. Or in other words, you sort of get used to it. Weird how your body can get used to breathing only 22% of what it should. But thats the amazing thing about our body, it can be trained. Thats why after transplant you have to learn how to use those muscle to breathe in deep again. Expand thy lungs. 

Thankfully, with my body being stubborn I am able to bust out of this jail early. I am headed out on Monday and hoping in the car to head back to MI for a quick whirlwind of a trip. Friday morning we learned that Jer Jon's grandpa passed away that morning, funeral to be on Tuesday. Gramps had been sick for awhile and so we praise and thank God that he is now in the arms of his Savior. What a wonderful place to be.

Now for the crazy part that makes my head spin: I have more things that I have to think about and make decisions about due to the nature of this beast we so "lovingly" call CF. As always I have to eat EAT EAT and then when I am full I should eat some more. Gain weight and as much as a quickly as I can. In 2 weeks when I am having a "good CF day" (basically saying after my IV treatments are done and ran its course...when I should be pretty stinking...well for lack of better words... HEALTHY) I have to blow some PFTs in the lab. If those number don't improve much (please pray they do!) I will have to make a choice to move up the lung transplant eval. SIGH that bad huh?!

Normally I suppose this thing wouldn't bother me so much. But I had a few months to get my body ready for all this: gain weight, pulm rehab, and just mentally be ready too. Ok, so I start now and just be prepared for what is to come. Easier said than done but I just need to remember to breathe and take this head on. Just get all my little ducks in a row.

One more decision. My veins are getting pretty tired of having PICCs placed so my doctor as well as my NP has suggested getting  port placed. Now I am trying to look at the thought of that little disc always in me and sticking out as just another battle wound in the war. It shouldn't be a big shouldn't (see how I am still trying to convince myself of that...) I should do it and be happy there is such a thing, right?! I would always have both arms, and in transplant it could be used easily. (Yes, more me trying to talk myself into it.) But the thing is after these 2 weeks with a PICC, its just pulled and then I don't have it...less CF if you will. But with a port it will always be there... can always see,  feel and have that little bit of CF.

Thinking. Eating. Breathing.

1 comment:

  1. Cassie don't you want a super secret magic button? It will just be that much more proof to those crazy gorgeous blond curls at your side that you are in fact a real life magical super hero! Keep you chin up, you are fantastic!