(Warning: Following this narrative requires paying close attention to the dates involved!)
After completing the first course of chemo infusions, the only major procedure for the sixth day in the hospital was a lumbar puncture for intrhathecal chemotherapy (taking a sample of cerebrospinal fluid ten pumping a prophylactic dose of chemicals to the brain). My chief physician said that it should be less painful than bone marrow biopsy—the only pain from which I felt was the local anesthetic before it.
The position, bent over my bedside tray and the side of the bed was very uncomfortable for me. My back was sore before I was hospitalized and this position seemed devised to put strain where it was least tolerable.
I could accept that, but was put off that I was put into the position long (to me) before the nurses (or whatever their official rank) were ready to start. And then one realized she had not brought alcohol along and had to go out in search of it.
They stuck me and stuck me and stuck me again. Only after half an hour did one rearrange the room so that my feet had support (two chairs) instead of dangling that hurt my back—and that I had said several times was bothering me more than the punctures.
After eight failures they attributed to my spine not being straight, they gave up referred me on to a CT-guided one. (The one who has done many, many said I had been a “trouper.”) They said that it might not be able to be scheduled since the facility closed at 16:30. I was thrilled to be told (at 15:45 that I would be picked up at 16:00. At 17:00 the procedure went perfectly, clearing the major obstacle to discharge, but then I had to wait for transport, get through a traffic jam of gurneys etc., and get an elevator.
Back in my room, I was guided through instructions including three pages of prescriptions. I am definitely not complaining about that, being so often asked to sign documents I have not had any time to review, including the consent for the previous treatment.
Then, the catheter was removed. I quickly proved that I could still pee (which was not surprise to me: not peeing was the problem before.) Then the peripherally inserted central catheter (PICC) was removed and I had to lie on my back for another hour, special torture since my whole day had been focused on getting out! But finally (20:11) I did
Seems like a fairly happy ending to an uncomfortable and painful story, but this is where institutional ineptness kicked in.
Friday I had an outpatient appointment, which went well. The hospital had ordered a computer-guided lumbar puncture for Monday. There was no one around with the authority to countermand the order, and the medical staff was long gone before 4:30PM Friday. Knowing that repeating the procedure so quickly, without even having seen any results of the first test was not normal, but did not cancel the appointment in case (a very bad case it would have been!) that Dr. Kaplan wanted more chemicals dispatched to my brain.
The hospital had not reported my Thursday discharge to OP. Eventually, it turned out that they had reported me discharged on Wed, scheduling the test that was necessary before discharging me for Monday.
I had thought that the lateness in the day in which it was done in Thursday was the source of confusion, but was staggered to learn I had been reported discharged Wed. Monday afternoon OP still had no communication from across the street that the procedure had been done, and this complicated scheduling follow-ups far beyond the capacity of the clerk who only had to make two “provider visit” followups for the next week. We were in the otherwise empty office nearly two hours after the end of the OP visit. (One clerk also denied that I had an appointment Monday, although I as sitting in front of her after the appointment…).
For the moment my white blood-cell count was above normal and the calcium level (that had been blamed for my earlier passings out) had fallen from more than double normal to less than normal.
Hardly “no harm, no foul,” though I learned that Paranassus Avenue seems to be unbridgeable chasm between hospital and OP and will watch out for other such breakdowns. And I should not have had the pain of the series of failed punctures, even presuming my spine has curvature. But I nearly had another one with no one wanting it to be repeated. And the unnecessary assumption of the uncomfortable position for the visual attempts with no amelioration for the first half hour disturbs me.
Plus, considering that a needle was being put up my spine, even if below where paralysis was a strong possibility of botching the procedure, but I was uneasy about the nurses getting and discussing text messages while I was not just present, but suffering (in silence, but visibly, I’m sure).
OK, the procedure seems to be routine for them, but this one was not, and I think should have commanded fuller attention.
Despite all that, I have to recognize that they then exerted themselves to get the computer-guided one done so that I could be discharged. Along with my day nurse, Kimberly, moving as much of heaven and earth as she could to realize my goal of being discharged.
And I learned that abnormal curvature of the spine is called Scoliosis and affects about one in a hundred male (white) Americans and two female ones. I never knew it existed or that I had it. From now on, I will articulate that I have the problem if anyone wants to try to puncture my span by visual clues! (BTW, the puncture wounds still hurt five days later, though the initial back pain has retreated.)
©2018, Stephen O. Murray