Obstacle to 217

No one likes spending a long time making their hair look pretty, especially while feeling yucky in the hospital.  Inspired by my favorite 2 year old’s recent new “Sassy Bob,” I asked my stylist for one as well.  I spent Friday morning relaxing in the salon, getting a few inches off to make my life a little easier.  I think Laney’s onto something because it’s so much quicker to dry and style!

It was still Friday morning, June 11, when I checked my voicemails after getting my hair cut.  On the phone was was Amy, my coordinator, and she said although the insurance companies, the Ohio consortium, and the Clinic had approved my case, UNOS refused to accept it without a chest CT.  Mind you, I had a perfectly normal chest ultrasound as part of the initial workup, and even Amy found UNOS’ demand unusual.  I’d like to hope it was meant to be, maybe to delay things or give me an opportunity to bypass an inappropriate organ, only God knows.

But it took time for my coordinator’s scheduler to figure out which CCF campus could squeeze me in for the short imaging test, so I decided I’d go to the nearby outlet stores.  (Went overboard at Gap!) Soon thereafter, I found out which of their satellite hospitals could run the CT, but the appointment wasn’t until the end of the day so I shopped one of our favorite malls in the mean time. (Did some damage at Sephora and Victoria’s Secret!) 

I made it to the hospital right on time for the scan and had to deal with some miscommunications and physician order-entry problems (nothing atypical)…  So by the time I got done at the hospital, I was driving in Cleveland rush-hour.  My nerves already destroyed for the day, I missed my exit and overdrove about 20 minutes before realizing what had happened.  I didn’t feel alert enough to drive back and home, so I called my parents who came and got me.  I bet you know the rest of the story.  Yes, I came home and absolutely crashed.

Saturday and Sunday continued to drain my energy, but I was able to go to a cousin’s graduation party on Saturday.  Everyone remarked on how I should be at home resting, but I just said, “All I’m trying to do is live like crazy.  My life is soon going to be changed forever, and no one is sure exactly what that will mean or what the future holds.”  Why not?  I can sleep when they have me under the anesthesia, and I can lay around when I’m in pain and have tubes doing all the work for my own body.  But for now?  I’m trying to live like it really matters.  Savor each moment with everyone.  Try it all, see it all, love it all.  …Even if that means having to lay on the “sick people beds” at church, limping around, or opting to use a wheelchair.

So today, we’re hoping UNOS will be okay with the chest CT result and officially list me!  I will still be #217 on CCF’s liver waiting list, but again, that doesn’t mean I’m #217 in line.  It just means that many from the CCF are listed for a liver.  My coordinator is assuring me I’m towards the top due to my age, size, blood type, and perplexing tumor.  We’ll see.

Stay tuned…

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