Sometimes I still shudder when I think of the horror Stephanie had to endure. She was a young woman when she was diagnosed with kidney failure, went on dialysis, and saw just about all of her life's dreams evaporate. And after about five years of dealing with her medical issues, and with too many doctors and nurses who treated Steph as a kidney instead of a human, she was only 48 years old when she died.
* * * * * * * * * *
It was 2013. In the previous couple of years, Steph had endured two unexplained infections — one on her leg, the other on her back — both of which had been removed via surgery, involving short stays at the hospital. She had hated the hospitalizations and surgeries, and wanted no more of either, so she was doing everything she could to keep her diabetes under control. Her carb-counts were meticulous and on target, and her A1Cs (that's the primary measure of long-term blood-sugar control) were good. Through the summer, we went to lots of baseball games, enjoyed evenings at the drive-in movie house, and thought Stephanie was in good health.
In the autumn, though, her legs began swelling, and we couldn't figure out why. As with every other health issue right up to the last, Steph was hesitant to see the doctor. It wasn't painful, so she put it off for a few weeks, hoping her legs would shrink back to normal lady legs. When they didn't, she made an appointment, and the clinic ran some tests.
It was the next day when we got the test results, and it couldn't have been more frightening. Steph had taken the day off from work, and turned her phone's ringer off so she could sleep. When she didn't answer the phone, a nurse from Group Health called me at work. It's still vivid in my mind; I was actually in the stall of the men's room when my cell phone rang.
The nurse identified herself, said that Steph hadn't answered the phone but that it was urgent that they get in touch with her. I asked what was wrong, and the nurse said she couldn't tell me, due to patient confidentiality rules. I said I'd call Stephanie at home, and I did, but she was asleep so the phone just rang and rang.
I called the nurse back, and said I'd been unable to rouse her.
"You're her husband, right?" the nurse asked.
"I'm her husband," I said.
"Your name is on the form I'm looking at, but unfortunately, she left the line blank where we ask whether we can discuss confidential matters with someone other than the patient, so I'm not allowed to tell you what the problem is."
"But it's urgent?" I asked. "I'm going to ditch work and drive home, wake her up and tell her whatever you tell me. So just tell me it's something health-related, not something like she forgot to pay the co-pay, or you just want her to make an appointment with a specialist or take some additional tests or something. This is genuine urgent?"
"It's genuine urgent," the nurse said. "I'm not supposed to tell you, but I'm going to tell you. The tests indicate that her kidneys are failing, and we're recommending that she go directly to the emergency room at University Hospital."
I said thanks, wasted 45 seconds telling my boss I was leaving for the day, and then I was on the way home. In the apartment, I went straight to the bed and gently shook Steph awake.
"What's going on?" she asked. "Why are you home so early?"
"They got the test results from your swollen legs, Steph. It's not good, and they want you to go to the emergency room." Steph being Steph, she wanted to know why, and because the nurse had told me, I was able to tell Steph.
That saved us maybe ten minutes on hold and on the phone if Steph would've needed to call, so yessir, when we saw that nurse a few months later I thanked her enthusiastically for knowing when to break the rules. Thank you again, Nurse Marie.
We drove to the hospital, twenty-five minutes in traffic with all our worries. In the emergency room we sat and waited for another half hour, and then we sat in an office booth answering a hundred and fifty health questions before they directed Stephanie into a wheelchair and took her back to a bed in the emergency ward.
We had entered what Steph later called Hospital Time, where everyone wears white jackets, everything moves very, very slowly, and every doctor and every nurse asks the same questions over and over again. "How long have your legs been swollen?" "Are your legs painful when you walk?"
After about twelve hours in the emergency room, Steph was admitted to the hospital, where they ran a gazillion tests and answered a gazillion questions. Overall, I'd say the folks at University Hospital were about as caring and competent as you could hope for, but it was frustrating. The doctors spoke fast, with lots of big words, and most of them seemed to be walking into Steph's hospital room with the assumption that Steph understood her kidney disease — well before Stephanie really understood her kidney disease.
It's hard to imagine or envision the ghastliness of it all, unless you've lived through it or (to a lesser extent, of course) unless you've lived with someone who has. Stephanie was always a woman who was made her own decisions and was absolutely in charge of her life, but that's the first thing that the kidney diagnosis took away from her. The day I rushed home from work and took her to the emergency room, was the day everything changed.
When you're diagnosed with kidney failure and ordered onto dialysis, you have really just one choice in the matter — you do as you're told, or you die. And yes, when Steph asked more questions than the dialysis doctors and nurses wanted to be bothered with answering, she was sometimes given that answer in just about exactly those words.
The most awful doctor she saw, during this hospital stay or any hospital stay, was named Agarwal. I'd love to include his first name just to shame him, but according to Google, there's apparently no longer any nephrologist (kidney doctor) named Agarwal affiliated with University Hospital. Google tells me there are several nephrologists in America with that last name, but I only want to critique and maybe punch one of them, so we'll go without a first name. He's just Dr Agarwal.
He gowned up and entered the room and introduced himself, saying something that gave the impression he was an expert on kidney disease. But everything about his demeanor was awful, wrong, uncaring, abrupt, and impatient, like he couldn't wait to get out of the room. When Steph and I asked questions, Dr Agarwal's answers were short, the opposite of explanatory, and we grew more and more frustrated with every answer that wasn't really answering anything. When Steph asked what could be done to address her kidney failure, he actually snickered before saying just one word — dialysis.
This was Steph's second day in the hospital, and the first time anyone had mentioned dialysis. We were actually hoping, until that moment, that a cure for her kidney condition was possible. We were about to find out, from the rudest doctor on earth, that there's no cure.
And the one word he'd spoken as the answer to her question — dialysis? Well, we knew nothing about dialysis except what everyone knows: it's synonymous with weakness, poor health, and short lives. So having a doctor say "Dialysis" and nothing more, was a lot like hearing a doctor say "Death" and nothing more.
We asked Dr Agarwal several questions, about kidneys and about dialysis, and every answer just confused us further. We asked whether this diagnosis would shorten Steph's life, and this man in a white jacket literally looked at the ceiling and sidestepped the question every time we asked, which was at least three times, maybe four. He simply wouldn't answer the question. If you're getting bad news from a doctor, it's hard to imagine that the news could be delivered with less giving-a-damn than we saw from that doctor.
About the only thing we could say in his defense was that Dr Agarwal was ethnically Indian, so English was perhaps not his native language. He spoke English quite fluently, though, and despite his accent there were no words we were unable to understand except for the medical gobbledygook. It wasn't a language barrier, we decided; it was a caring barrier.
If there was a bright spot to getting the bad news from a bad doctor, it's only that it gave us something to talk about that afternoon and evening, besides the bad news itself. Steph had little appetite and the hospital food was inedible anyway, so after we'd talked it through for several hours, I slipped out and got her a sandwich she could eat from Milio's, a mile away.
That night in the hospital, like every night, I slept in a chair beside Stephanie's bed, but as you might expect we didn't sleep much.
Steph had seen at least ten different doctors in the two days since she'd been admitted. That's because UW Hospital is a "teaching hospital," where you're rarely seen by just one doctor; instead you're seen by one teaching doctor with four or five student doctors trailing along. The patient is a living classroom, and philosophically we had no objection to that, because how does any doctor get good at doctoring if not through seeing patients? But playing dual roles as both doctors and teachers, doctor's visits sometimes became classroom question-and-answer sessions, which made deciphering the medical jargon even more difficult. We had a lot of questions, and felt like the students were getting better answers than we were.
After two days in the hospital, all we knew for certain was that Steph's kidneys were failing, that she was destined for dialysis, and that we hoped to never see Dr Agarwal again. Steph was irritated and grumpy, and late in the evening, a nurse brought some pills, and had the time and willingness to listen as Stephanie vented her worries and frustrations.
This nurse didn't just bring the medicine Steph needed; she was the medicine Steph needed. She listened intently while Stephanie spent perhaps ten minutes recounting everything she didn't understand about her hospitalization and diagnosis. The nurse answered many of the questions we had; she explained what the kidney is, what it does, and what dialysis is — questions Dr Agarwal hadn't answered. And she answered the lifespan question: "Yes, dialysis probably means a shorter life, but many people survive on dialysis for decades, so it's not the equivalent of the Black Plague."
Stephanie was a very strong woman, and even in sickness she remained strong inside. She could handle the truth, and preferred it to someone sidestepping the truth. From this nurse on the night shift, we gained a better understanding of the truth, and we learned something that became our Rule Number One through all of Steph's medical appointments for the rest of her life:
"Whenever you're talking with a doctor about your case," the nurse said, "you should have a notebook and a pen and be taking notes. This stuff gets complicated. You took notes in school, and this is much more important than that — so take notes." The nurse even brought some index cards so we could begin writing down what we'd learned, and the questions we wanted to ask. The next morning, I ran to the store in the hospital's basement, and bought notepads — one for Stephanie and one for me. And from that day until her death, any time Steph had a doctor's appointment or was admitted to a hospital, either Steph was taking notes, or I was, or we both were.
That same helpful nurse also said, "You have to speak up for yourself, over and over again until you understand what's going on. If you don't understand, ask again. And again and again, until you do understand. Because honey, if you don't understand you'll make the wrong decision, or they'll decide everything for you."
After that, in Stephanie's mind and in mine, her medical visits were all about understanding the situation. No longer were we helpless in a swirling hurricane of doctors and nurses. We became active participants, and that's crucial to good medical care. We asked lots and lots of questions, and we kept asking questions until we understood the answers.
Stephanie's nurse that night was a middle-aged black lady with an African accent and the outlook of an angel. She was Stephanie's nurse two more nights during that hospital stay, and we thanked her several times for her help. And then we never saw her again. We intended to write a letter to the hospital, saying how excellent she'd been, but we never got around to it, and for that I'm still very, very sorry. Within a month we'd forgotten her name, but we never forgot that nurse. Thank you again, whoever you were.
* * * * * * * * * *
After a week in the hospital, Stephanie was discharged with a better understanding of her kidney disease, and of her role in her own medical care. She was given some new medications, and an appointment to see a doctor at the kidney clinic, who would make arrangements to begin her dialysis.
A few days later at the kidney clinic in Fitchburg, we met with a nice nurse named Cindy and a warm, competent doctor named Thomas Chan. They explained the intricacies of hemodialysis in the clinic, versus peritoneal dialysis (PD) at home.
I've described already how it all works, so let's not re-describe it at length today. But briefly, dialysis at the clinic means you're there three days a week, for 3-4 hours each day, depending on your dialysis prescription. Dialysis at home is done overnight, every night, while you sleep, and you only have to go to the clinic twice each month, for tests and monitoring sessions.
Cindy and Dr Chan gave us a tour of the clinic, where we walked between rows and rows of people in chairs, tethered to tubes, receiving hemodialysis. They looked almost unanimously unhappy and uncomfortable, reinforcing Steph's already-made decision that she wanted to avoid the clinic as much as possible, and do her dialysis at home. We also noticed, walking along a hallway, that Dr Agarwal's name was on an office door at the clinic. All the more reason, we reasoned, to avoid the clinic as much as possible.
On the way home from our first visit to the kidney clinic, we discussed the possibility that one day, Dr Chan might be out of the office or on vacation, and Steph might be seen instead by Dr Agarwal. We decided our strategy instantly: if/when that happened, we would simply refuse to accept Dr Agarwal's services, and instead politely reschedule the appointment for a day when Dr Chan was present.
It never happened, though. After Dr Agarwal's one awful and infuriating appearance at the hospital, we never saw that schmuck again, and that's the only thing I'd thank him for.
Once, during an appointment, Steph's dialysis nurse Cindy mentioned Dr Agarwal's name, just in passing, and Stephanie audibly gasped. "Have you met Dr Agarwal?", Cindy asked.
"Yeah, we've met him," Stephanie said noncommittally.
"Well, that's surprising," Cindy said. "He's more a research nephrologist than a practitioner."
We didn't say it, but Steph and I were both thinking, "OK, maybe he prefers research. No Shinola, Sherlock. And his patients prefer he does research."
* * * * * * * * * *
A couple of weeks later, Stephanie was back in the hospital, for the surgery to install her catheter. That's the port, permanently attached to her belly area, where dialysis fluids are pushed into the body, and the toxins are drawn out of the body. Dr Chan, Steph's kidney doctor, would perform the surgery, and we had already met with him twice, once at the clinic and once in a pre-surgery appointment, where he had explained what he was going to do and why.
On the afternoon of her surgery, though, while waiting in the pre-op room, Steph changed her mind. She suddenly announced that she didn't want to have the surgery. I wouldn't quite call this a freak-out, but let's call it mega-jitters. It's certainly understandable — Stephanie was barely forty years old, and three weeks earlier we'd thought she was completely healthy. But now she had a frightening and eventually fatal diagnosis, and a permanent medical device was about to be surgically installed near her belly-button.
Dr Chan probably had many surgeries and appointments on his schedule for that day, but to his great credit he came to Stephanie's bedside and answered each of her questions again — the same questions we'd already asked at the appointment. He might have been justified to be a little grumpy and Agarwalish, but instead he was extraordinarily easy-going and thorough.
He began by assuring Stephanie that he absolutely would not perform the surgery so long as she had any doubts about it. He sat with us for almost an hour, easing Stephanie's doubts, explaining again what the surgery would entail, and why her kidney problems and test results meant that she needed to be on dialysis.
Stephanie heard him out, and slowly morphed from hesitant to agreeing that the surgery and catheter were necessary. She cried for a while, and finally went under the knife about an hour and a half later than she'd been scheduled.
Dr Chan was Stephanie's nephrologist for the next couple of years, and we always thought highly of him. When Steph's doctors were late for appointments, we often said, "Perhaps there had been an emergency, or maybe someone just needed some extra explaining." Like Steph had, that day.