Official But Not Official

So from my end, I’m listed even though on paper I’m not. The time has arrived for all intents & purposes.

From my team’s end there’s a few loose strings to tie up first.  It’s just a few administrative loose ends that are keeping me from being in the computer officially. Those will resolve soon enough.

At my appointment yesterday,  we discussed how long I have to be off the Rapamune before I can be officially listed in the UNOS system computer.

There was also one more vial of blood they needed to take for an update that is also needed prior to listing.  Which I went to a local Quest Diagnostics lab this morning to have that drawn.

When all of that is complete, it’s a done deal.

In addition,  I have to meet with the other transplant surgeon at my center on 3/23 for a pre-listing meeting.

This where I will sign surgical consents & find out more information on the donors that are available to me.  This meeting also is to ask if feel comfortable with accepting organs from donors they classify as high risk & provide other final instructions that come with listing officially.

They also might draw an extra vial of blood after that meeting so they can have a little extra for matching & testing when calls start coming in.

But my work in the process is done.

A few friends of mine (one of them who has LAM & had a lung transplant awhile ago) that I met through my local cookie drive (last November) are helping me out with some finer points & contingencies.

If & when I start getting calls, my bestie/caregiver & I wanted a back-up plan in case a call happens during rush hour or some other time where a delay is possible so we wouldn’t lose time sitting in traffic or getting stuck if an accident happened enroute.

Since we have to be down there within a certain time frame, the faster we can make it down there (even around wrinkles) the better.

So, I’ve still got a bit of a window to wait yet…but from my end, it’s official. I’ve done everything I have to do.  Now it’s just a matter of time…

I was forewarned that it’s possible I could get calls before that pre-listing meeting if I’m put into the UNOS computer before the 23rd.  Knowing that was a possibility my NP & pulmonary doctor gave me the crash course on the most essential points of that pre-listing meeting at my appointment.

My gut though tells me it’s highly unlikely I’ll get any calls that soon.   I guess I’ll cross that bridge if & when it happens.

But the clock officially starts for me within the next 5-14 days or so.  Once the Rapamune clearance window is up, & they receive that last test result from Quest & then put me the UNOS computer.  I’ve done all I can from my end.

Now it’s just a matter of the waiting game.

I feel ready…but I have a feeling this will be another new big ball of wax to adjust to.

Yet I can’t help but feel ready to take the leap.



One thought on “Official But Not Official

  1. Unofficial congratulations and good luck Nikki, on your path to better health. Knockin’ Wood 4U!

    Liked by 1 person

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