She was nearly a year from her 50th birthday, but her brown Samoan skin was smooth like her hair, coiffed just so. A low pompadour was slicked into place with gel. I walked into the clinic exam room to find her face was clenched like she was silently counting down the seconds until she would get up and leave because she didn’t want to be there in the first place. I apologized for keeping her waiting so long. I was glad she felt as well as she did and at the same time a bit surprised and even a little skeptical that she felt as well as she did. Either she had just become used to feeling bad or she didn’t want to tell me how bad she did feel.
Usually people with a hemoglobin of 7 when normal is 13 felt tired or short of breath, or had chest pain when exerting themselves, but she did not. Usually a large person with kidney function down to 7% felt nauseated, often vomited, and needed frequent naps. But she only admitted to maybe a metallic taste in her mouth. But that was caused by the pills, she believed. Doughy flesh spilled over her feet without a hint of an ankle. But it was only because she was on her feet a lot, she said.
I explained her lab results. Gave my advice. Preparing for dialysis was long overdue.
“I told my primary care doctor and the other doctor here, I’ll tell you when I am ready,” she said averting her eyes.
Here we go again, I thought as I took in a deep breath and exhaled slowly. Yet another patient with advanced chronic kidney disease refusing to do what was in her best interest. Yet another patient with an understanding of the inevitable, but still a refusal to take action to create the best of a bad situation. As if a miracle could still happen.
In my mind the miracle was the dialysis. Had she lived 50 years ago, she would be dead within a year. Her 16-year-old baby girl, motherless, just when she could begin to understand what it would take to be a woman. With dialysis she could expect to live years, a decade or so, maybe even get a kidney transplant.
She could acknowledge that her kidney function was very low. She understood what dialysis was and had no questions about it. Her mother was on dialysis for 15 years after all. She knew she couldn’t escape dialysis and live. She could articulate that waiting would mean an emergency room and rushing to things that could be avoided with controlled preparation. But still she could not reconcile these “knowns” with an overriding desire to avoid the situation until it was at the level that she had no choice.
I tried to put myself in her shoes, stretched as they were with swollen feet. I acknowledged how hard it was to come here and listen to bad news and more bad news. I understood how scary this all must be. I articulated that I knew how difficult it must be to believe this voice she’d never heard before. I apologized for having to tell her such things, though she didn’t know me from Eve, but that I felt I needed to because I was worried for her and wanted to spare her the emergencies I had seen others like her go through. Unnecessarily.
“I wish I had known you for the last year or two, so we could have time to get to know each other, so you could know that I am telling you what is right for you,” I said.
Her brown eyes were looking into mine.
She agreed to allow us to keep a close eye on her. She agreed to repeat her labs before each visit.
“So, when you come back, I won’t be here but my colleague will take good care of you. I am only in this clinic about a quarter of the time.”
“When are you back?” she asked. “I want to come back then.”