Backtracking: The following was written March 18th. WBC was 20.
These past three days have been hard. During the day I need my mom here all the time because the act of just sitting here leaves me breathless, my chest is constantly heaving with effort and things that I took advantage of a week ago (like reaching for my pills an arms-length away or walking to the washoom) have all become such effort. .82 L days, I miss you... these days are humbling and scary--how does one crash so fast? Cursed with a wicked imagination, a reel of possibilities play through my mind, and none of the scenarios are rosey. Suddenly I find myself constantly talking about transplant--not wanting to "miss the boat", since that possibility is very real.
Yesterday I went for my first walk in two days, it was nice to finally get out of the confines of this room, however it wasn't nice to nurse my hypoxic headache after. I now need to use 3 L of oxygen for walking (or anytime I get out of bed basically), 6 L for exercise, and .5 for sleeping and when I'm sitting and feeling in distress--this is a drastic change from last week when my sats were 96-97 and I required no oxygen. It's baffling and disturbing how quickly CF can rear it's ugly head and knock you down for the count.
Oddly, my nights have been much easier, the shortness of breath eases up and oxygen requirements lessen--I dare to say I almost feel 'like a new person', maybe I'm a vampire and don't fare well with sunlight? And so I often stay up until 1-2 am, relishing in my good hours of the day and dreading the start of a new one. Last night I had trouble sleeping and woke up breathing hard, so I tossed and turned and the struggle didn't let up, hence I gave up and rolled out of bed around 7:30 and now I'm here catching up on blogging. Today my mission is to talk to the docs to get a piece of mind (again) and to attempt another walk that doesn't end in a hypoxic headache. Wish me luck!
P.S. The good news is I've gained some weight (now 87 lbs), which is important for transplant (they want me around 90 lbs)--despite living on a liquid diet during the day for the past few days... thank you lack of movement?
1 year ago
Hang in there. It is shocking how quickly control is lost, I remember for me it was so drastic, I thought the chance of my getting lungs with my blood type in time was a long one. Keep those dark thoughts away, they are useless to you. You are waiting, and that's all you have to do now. I too talked about transplant endlessly at a certain point. I was so motivated to make it happen. The fear of living in the shape I was, was 100 fold more powerful than the outcome of tx. The good news, and remember this each and every second waiting, is that so much good is ahead. Close your eyes and imagine that in hard time. xoxo