Major Changes

In March, I got the flu. April 1st, I went to the ER at Stanford and ended up in the ICU, fighting to live. I have been listed for lungs and am at the top of the list for my size and blood type.

So basically we're now in a holding pattern, waiting for that perfect set of lungs. Waiting for that call. Waiting, waiting, waiting. I'm feeling better today, first day that I feel really in control of myself for a few weeks. The plan is to just keep me here, in the hospital, until the call. Taking a lot of walks, eating all I can, drinking supplements, and getting as strong as possible so I can have as much as possible to get through the surgery. IV antibiotics will end in the next two days or so, as the infections are about as clear as they'll ever get... not much more that can be done on that front since my lungs are so shot to hell.

But they keep saying that as far as they're concerned, I'm the optimal candidate. In my CF doctor's words yesterday, "The fact that you pulled through a near death experience, are regaining strength, and are up and walking makes you the ideal candidate to get lungs now". Of course it is unbelievably scary to hear "near death experience", but that is about where I was a few days ago.

I really don't remember much from the 2nd to the 7th. Brief flashes of panic. Vomiting the g-tube. Explosive nose bleed from the high pressure nose canula. The unbelievable discomfort of the n-gtube... being commanded to swallow over and over as the placed and replaced it. Screaming about panic attacks. Wanting to just be knocked out. Fighting, fighting, fighting. Not being able to find the control center in my brain. Feeling lost in my own mind and body. Reciting to myself over and over my name, where I was, and who was in the room... it felt like if I didn't I'd forget it. Bi-pap that made me feel like I couldn't breathe at all... that air was stuck in me and would never leave. Having no voice, being unable to communicate, and not being able to get relief. Feeling like my heart was trying to climb out of my body.

But now I'm back in me... I think. Sometimes I still get a little lost in here. Not sure what is going on. Wanting to just know what the next week, day, hour will bring. Wanting relief from the constant poking and prodding and mask and sounds and beeps and tubes and wires and aches. Knowing that will only come with new lungs. That there is still another mountain to climb, at least. And there may be more after that. Wishing I knew how many there were going to be so that I could get in a good place mentally for it, but knowing that is impossible. That bugs me a lot. I like to know what is ahead. But we don't. Holding on to God. Talking to friends and family who are on longer here. Prayer. Hope. Faith. Love.

I am here. I am ready. I am fighting. If the call comes today, Friday the 13th, which already holds special magnificence as I was married on one. Tomorrow is my husband's birthday. A fitting gift would be life for me. The 27th of April is another important day in my life... 25 years ago an emergency appendectomy when I was four. My parent's anniversary. And my beloved and much missed grandfather's birthday. Maybe he'll pull some strings and send me a gift of lungs. Save his "tweetums".

In the words of my Eva, "Love. Always Love".