In hospital now since Monday 3/24. Last night’s chain of correspondence from me, no answer yet from Dr. Linker,:
Date: Thu, 27 Mar 2008 23:47:09 –0700
Dear Dr. Linker,
I made a significant nuisance of myself, persisting repeatedly through three layers of personnel to insist that your order -- that the IVIG be started immediately after the second count-sample was drawn, regardless of what that count would thereafter reveal -- be honored, despite my original sense that the rate of degradation of Devora's platelets should be actually measured before decision on IVIG was finalized.
Finally, word was relayed from the presiding doc that the change in orders came not from others but directly from you, after seeing that amazing jump to 66 (from what, two hours after registering at 6, was essentially a completely empty platelet tank in me.)
Given how involved I am in all this, and how faithfully I bow and adhere to your orders, it sure would be nice to be kept in the loop when you change one that you have discussed with me so clearly and precisely. No hard feelings; I know you've got a lot to juggle. But when you can, please do, if only to keep me from making such a nuisance of myself.
Besides noting that the second sample was drawn not two hours after the immediate post-transfusion sample, as I'd insisted to get a clear measure of degradation-rate, but nearly 4.5 hours after, due to problems I won't recount here ...
... and (hopefully) bare minutes before that result finally gets back from the lab, I offer you this chain of reasoning:
If my body chews Devora's platelets as it chews others, at 4 to 5 per hour, that second count will show them at 44 to 48, well above your level of 20 to do the IVIG. But if so, as one must assume that at best this is a linear process, my platelet count will drop to 10 sometime between 4:45 and 7:15 a.m., and to 0 between 6:30 and 9:30 a.m. I will know shortly whether this unpleasant prediction is as likely as your original estimate of the likelihood of my body routinely chewing up her platelets. If so, I will need another platelet transfusion very early tomorrow, arguably by 6 a.m.
So far as I am aware, provision has not been made for this possibility. I sure don't want to be, at 6 a.m., trying to convince people to count me, wait an hour for the count to come back, then order platelets, wait another hour to get them, and so on, with my count at zero and the several unfortunate possibilities of consequence.
Date: Fri, 28 Mar 2008 00:08:51 –0700
My platelets were 66 at 5:15 pm. At about 9:40 they were down to 45. That's a decline rate of about 4.7/hour. Straight extrapolation predicts a count of 10 at 5 a.m. and 0 at 7:15 a.m. or so. I'm going to try to talk with whoever's in charge here to take steps to cover me, but if you happen to be awake and could make the call for him to heed me, that'd be dandy.
By my calculations, my platelets are at 13 now and due to bottom out at 0 by 6:30. After persistence in the face of blind incredulity, I got them to draw a sample for platelet count at around 3 am, which should show me around 18 to 20. It's an hour later now and no word. I'm about to go out into the hall to inquire. Though my words have been precise and laconic, there is of course a radiance of anxiety when I note that the last time my counts were so low I was defecating pints of fresh blood. They'll shudder when they see me coming again.
Linker left an order that my IVIG was to be begun only if/when my count was under 20. I have been clear and insistent that his order is to be honored; no one has paid me the slightest regard on this. The by-the-book posture is that they'll look at my counts when these come back from the lab, and then they'll think about it. I imagine that if the count comes back at 4:30 as being 21 as of 3 am, they will insist on another count and so on, rather than believing that I'll be well under 20 by then.
Meanwhile, I've been working on editing the Learning Games book manuscript while listening to the Schubert piano trios, and having a wonderful time. Karen, bless her heart, has actually managed to sleep for several hours now.
I'll keep you posted.
Date: Fri, 28 Mar 2008 05:53:16 -0700
The pace of decline has slowed somewhat; my platelets were 29 at 3 am, the pace having declined to -3/hr the past four hours. It's nearly six, they're starting to transfuse a unit of platelets now; should be around 20 now, 40 maybe in an hour when the platelets are done; down to 10 between 1 and 3 pm, which gives plenty of time for the next steps. I'll sleep like a log till then.
Love you; sorry to have kept you on tenterhooks.
Date: Fri, 28 Mar 2008 07:29:15 -0700
To: Lorca Rossman <email@example.com>
no clear necessity for you to be you onsite here. even at -5/hr being not due to hit 10 till 1 pm, which should give Karen enough time to secure the next platelet transfusion and get Linker's IVIG on track.
This platelet transfusion is nearly done (90 minutes!). they'll take another CBC soon. On the brighter side, I am technically not neutropenic as of 3 am, tmy ANC having risen to ~510 then.
Date: Fri, 28 Mar 2008 07:45:33 -0700
BTW -- One of my ports has been occluded for most of a day, which is why it took three (or was it four?) hours to pump one unit of RBC at nominal 150 ml/hr with me pushing the restart button every 20 seconds, before they'd consent to drawing my count-sample and then finally after receiving results gave me platelets. Subsequent heparin soak-and-flush, reluctantly at my insistence, had opened it sufficiently to deliver that normal platelet sixpack at 100 minutes by open. high-raised drip. Repeatedly, two different pumps said "occlusion on patient side;" repeatedly, this nurse (by far the best of the people I interacted with during the long evening and night) struggled visibly to pull blood from the port before flushing it, and insisted that her muscular difficulty was just ordinary port behavior. Same scene just now, as she checked the (same!) port after the platelets finally finished dripping.
She drew a sample for my next CBC, I imagine it may be here by 9 am.