Friday, September 23, 2016

My Negotiated Departure

I made it home yesterday. I felt a bit like an inmate, and my lawyer.

My counts yesterday morning were not the best across the board. My creatinine was up to 1.01, which we thought there were other factors that explained this. My platelets were up to which is a contra-indication for HUS. However, before I left yesterday my doctor wanted an analysis of my schistocytes, or broken red blood cells, before I could leave.

This is the infamous test from last time that they needed back before I could leave. It was suppose to take an hour and ended up taking more like 2 days. I reminded my doctor of this from last time, and he said the person who did the test was out that day, he'd follow-up with him directly. This was about 9 am.

On morning rounds, I got my doctor to okay pulling my PICC line which was a great first step. It is the long lead item to leave NIH. Once the PICC is pulled you have to lie perfectly still for 30 minutes. I will push boundaries sometimes, but I am very conservative on anything to do with a central line to my heart.

By 10:30, the PICC was out, my parents and sister had arrived and still no test results.

I'd told my doctor, and the team rounding, that I needed to leave by about 11 am to catch my flight. At 10:45 I called my doctor, and the results still were not back but he said he would get the discharge orders in and to keep my cell phone on.

I made it home last night with no call from NIH, and no results in email, or online yet. I feel like I usually day the first day home which is mostly exhausted, and very glad to be home.

My sister, was commenting, how strictly my activity was monitored in the hospital, and then you are released and on your own to get to the airport and make it home. It is quite a dichotomy.

I am glad I pushed the pace on the activities to get me home. Right now the plan is a couple weeks of rest and recovery at home, and then I return to NIH for one last cycle of treatment Oct 11, and then a few weeks later my last trip to NIH for awhile for final treatment testing.


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