The Two Kinds of Decay

Supplies

In December, eight months after the diagnosis, I decided I’d learn how to flush and dress my line. I still needed it. I was on my sixth month of periodic plasma exchange.

So I looked at the entry site with the bandage off, for just a moment, and that was enough progress for a few days.

But I got better at looking at the site, and my visiting nurse made me a booklet of three-by-five cards, tied together by a white string in the top left corner, that explained in steps how to flush and dress the catheter.

Even if I learned how to do it, my nurse would still have to visit me at school each week and look at the line, just to make sure nothing was wrong that I hadn’t noticed.

I was as excited about learning how to care for my central line as my nurse was about visiting me at Harvard.

On my Nursing Visit Summary from December 21, 1995, Fran wrote:

Pt uses excellent sterile technique for flushing line. She also uses excellent technique for dsg Δ. Has some difficulties c applying Tegaderm. Pt continues to feel stronger. One or two more f/u + pt should be independent c care. Next visit 12/23/95.

On December 23, a different nurse wrote:

This visit to f/u apheresis care. Pt performs flushing + dsg Δ s error. She is very meticulous. Can be independent c dsg Δ.

I’d go back to school with enough medical supplies so I could care for my line whenever I needed to. This is what I brought:

1 large red biohazard container; 10 cc syringes; 5 cc syringes; 3 cc syringes; saline vials; heparin vials, vial spikes; needle covers; interlink caps; injection caps; adhesive patches in three sizes; gauze pads; nonsterile rubber gloves; individually wrapped “sterile field” kits, each of which included 1 sterile waterproof paper sheet, 1 pair sterile gloves, 1 sterile surgical mask, sterile gauze patches, alcohol swabs, iodine swabs, adhesive compound swabs, 1 roll sterile plastic surgical tape.

I’d meet each week with my nurse and three times a month with a representative from the company that delivered my medical supplies and fetched my biohazard container when it was full. It was a lot to do in addition to my treatment schedule and my classes, especially since I was feeble and couldn’t walk far.

Every couple of days I made a sterile field on my college desk in Dunster J-22 and flushed and dressed my line. Once my two suitemates, who are still my friends, sat on my bed and watched me do it. They watched and asked questions and listened.

I saved most of the flip-off caps from the vials of saline, heparin, and other solutions I infused. Each vial of solution was covered by a sterile bladder that could be pierced by a needle that drew the solution into a syringe. And each sterile bladder was covered securely with a plastic disc, its lip covering the lip of the vial, and each disc was stamped with raised letters that spelled FLIP OFF, because you were meant to press under the lip of the disc with the top of a thumbnail until the disc flipped off onto the floor or some other nonsterile area, so that nothing touched the vial’s sterile bladder.

The FLIP OFF discs were chartreuse, pink, red, black, gray, white, or another color, depending on the solution in the vial.

I stuck the discs on my stereo and on every light switch in my suite. And I gave a lot of them to friends, who stuck them, with putty or with a small rolled-up piece of surgical tape, on their own light switches and on the switches of their electronic machines. Or in the middle of a wall.

I threw out at least a thousand discs. I wish I’d saved more of them. My old suitemates both still have a few.