Thursday, September 1, 2016


That’s me.

Every email I’ve sent to my doctor, and his team, at NIH always ends up with a subject line of HF-26. I have not asked anyone what it stands for, but am pretty sure it is Human Factor 26.

I know I am the 26th patient at NIH in this trial (and number 77 overall including other locations). For awhile, it was a bit of a game with me. I’d send emails with subject lines of “labs” or “update” and when my doctor replies it always gets changed to HF-26.

It is kind of dehumanizing to be referred to like a robot in Star Wars. Luckily the research nurses are wonderful and text me, call and keep me in the loop on every decision pending, and treat me like a friend.

My labs yesterday were not the best. My creatinine was down another 0.1 to 1.01, but not to the 0.9 or below levels my doctor wants to see. My hemoglobin and platelets were down too… and oddly enough my glucose and ALKP were low even though I had eaten breakfast, same as I always do before my Wednesday labs.

I still have a ticket to go back to NIH next week. For most of yesterday I thought that I was definitely going back next week and what was going to happen (treatment vs testing) would depend on my labs next Wednesday. My doctor has decided he thinks we should push my return to NIH back another week so we have a better shot of being able to continue treatment. He has to get the drug company sponsoring the trial to align to this, so I am on hold for the next few days, while they get aligned.

My family is excited about the thought of me being able to be here another week. I feel lucky to have a teenager, and tween, daughter that actually want me to be around. I am just glad I get the 3 day weekend coming up at home. It looks like the torrential rain is going to pause here for nice weather which will make the weekend that much nicer.

We are hanging loose, and taking it day by day….

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