Stephanie had a lot of health issues. She had endured several unexplained infections, including one in her left leg that eventually reached the bone, necessitating the leg’s amputation. Her kidneys failed without warning roughly six years ago, and she began dialysis shortly thereafter. She also had a heart condition, and a compromised immune system, and other medical issues. With all these diagnoses, she was seeing a fleet of doctors and nurses on a regular basis. We had appointments almost every week, often two or three appointments, and she hated it.
“I don’t want to be a permanent patient,” she had said when she was first diagnosed with kidney failure. But there was really no way around it. The kidneys are supposed to cleanse toxins and waste out of the body, and without working kidneys you have to rely on dialysis, a mechanical system that mimics what the kidneys do – but it’s not as efficient or effective. Dialysis meant going in to the kidney clinic three times a week, for treatments that lasted several hours and always left Stephanie so drained of energy that the rest of her day was spent asleep. So dialysis wasn’t just a four-hour session three days a week; for Stephanie it was, in effect, three whole days lost out of every week.
When they let her switch to a different kind of dialysis that she did at home, it meant fewer trips to the kidney clinic. But it also meant she was tethered to the bed for treatment, eleven hours a day, seven days a week. Plus, there were two required trips to the clinic every month, first for tests and then for what we called “hollering,” where the nurse and dietician analyzed the test results and peppered Steph with questions and advice about her diet and her activities and her meds. Plus, there were other frequent trips to the clinic, or the drug store, or the emergency room, if the tests showed that the dialysis was leaving too much of a particular chemical in her system, or too little.
When some new health issue arose, Stephanie usually delayed making a medical appointment. This was a road we’d been down several times, through several illnesses and hospitalizations. I would try to gently suggest making an appointment, and she would tell me that she was in charge of her own health care, and that the more I nagged the less likely she’d be to make an appointment. Which might sound like a bitchy thing for her to say, but I could see her perspective then (and even now).
My thinking was always, if I was in her situation I would make an appointment to see a doctor. But then I’d tell myself, that’s too easy for me to say, because after all, I’m not in her position. I don’t see doctors all the time, to the point where the mere thought of seeing a doctor makes me sick. I don’t have to hook up to a machine overnight, every night. I don’t have nosy nurses asking me what I eat, and always telling me to eat more of this and less of that. I don’t have people telling me to pull up my shirt and expose the catheter in my belly, so they can judge whether I’m keeping the site clean enough. Health care was exhausting for her, and exasperating. She had become, against her will, sort of a permanent patient – exactly what she didn’t want to be.
So as Stephanie’s appetite faltered in the weeks leading up to her final hospitalization, every few days I suggested that she should see a doctor. She kept saying no, it’ll pass, don’t worry about it. “I have enough medical problems. I don’t need any more.” And I let her win those arguments. Or even worse, I didn’t much argue. I said my piece, but I didn’t pound my fist on the table.
And now, I’m really angry about that. It’s possible that seeing a doctor even a few days earlier might have made all the difference in the world.
So, yeah, I am angry at Stephanie. Damn it, when you’re sick, see a doctor!
But I am especially furious at myself. Why the hell didn’t I argue with her, and demand that she see a doctor?
Sometimes I’m doubtful, but other times it feels like it’s entirely my own fault. It wakes me in the middle of the night, makes my eyes wet while I’m at work, or makes me scream when I’m alone. It seems so obvious now, that we needed to get Stephanie to a doctor. And it feels like it should have been obvious at the time. But … it wasn’t obvious, or at least it wasn’t obvious that it was literally a matter of life and death.
I can’t think of a greater regret in my life.
More about Stephanie.