Nurses

On Friday, at the hospital, I got a crash course on living with a PICC line. The dressing has to be changed periodically, and I have to flush the line with heparin every day. It's complicated: everything needs to stay sterile, and I have to avoid pulling the line out by accident. To take a shower, I have to Saran wrap my arm and lock it down with medical tape.

Yesterday two Michigan Visiting Nurses showed up to do the 24-hr. dressing change. Nurse R pulled out a huge stack of paperwork, most of it designed for people who will be wearing their PICC lines for many weeks or months. In the stack were some surprises. The nurses expected me to have a bag of supplies containing 5 days worth of new dressing kits, heparin syringes, and blunt needles, but all the hospital had given me was one dressing kit, one heparin syringe, and no needles. They showed me a prescription they'd been faxed for all this stuff; according to them it was something the hospital should have handled without me having to ask for it. In fact I never saw that prescription at all.

They also had virtually no information from Oncology, even though Dr. A had mentioned that the Visiting Nurses would come by for this purpose. So they didn't know what I had, or how long I'd need their services. But Oncology never sends us anything, they said. They talked about other left hand-right hand problems too, even within the hospital. As usual in most of my hospital experiences, the nurses knew a lot more than the doctors about exactly what patients would need, and they have workarounds — I've got a bag in my car... — to get you the supplies.

We learned a lot. Gabrielle and my excellent friend and colleague Yan have planned out food supplies for the next couple of weeks, with colleagues and friends, many many of them, signing up to deliver dinners on Yan's wiki (thankyouthankyouthankyou, everybody!!!). Gabrielle had already sent out some guidelines on good/bad foods, but the nurses told us more. Nurse S had worked on the cancer ward. No fresh fruit or vegetables, no raw food of any kind, she said. (Man am I going to miss sushi). Anything I eat needs to be cooked, or processed in some other germ-assassinating fashion (pasteurized juices, etc.).

They also advised us to have Luka take off his school clothes immediately on coming home, to quarantine the airborne viruses and bacteria that have fallen on his clothes during the day. Only paper towels in the bathroom and kitchen. Nobody should use the same bath towel twice, especially me. Dishwashing only with rubber gloves, for me, and maybe not at all so long as the PICC line is in (can't risk splashing dishwater on it).

With no white cells and low platelets, even a tiny cut could put me in the hospital if it gets infected. This'll be tough for me. I like to fix things and bang around with tools. We have an old house, so there's lots of fixing to do. I'm used to always having a few little cuts and scrapes on my hands; mostly I don't even notice them when they happen. Same thing with shaving cuts, so I think I'll only shave every other day. (If the beard gets too long between shaves, the risk of cuts actually goes up.)

These elaborate precautions are a far cry from Dr. A's rosy picture: No contact sports, he said, but you'll be able to do almost anything else. It all comes down to how much you want to minimize risk. Maybe nothing we do will stop me getting some secondary infection — but wouldn't it be better if I didn't? Days I spend in the hospital will grind even harder on Gabrielle and Luka, not to mention raising everybody's anxiety level.

And as everybody knows by now, the hospital is the last place you want to be when you're at extreme risk of infection. Every year, 2 million of the 35 million patients admitted to US hospitals catch something in the hospital that they didn't have when they went in there. More than 26,000 of them die of it.