Diagnosis: Peripheral Artery Disease

It was 2012, I think, when Steph first had difficulty walking. It took several tests and appointments over the course of about two months of misery, before the doctors figured out that she had an infection in her leg. Once the infection was surgically removed, though, Stephanie slowly regained the ability to walk without difficulty.

Later came the kidney failure, and the dialysis, which I've mentioned before and will doubtless mention again. Dialysis made Stephanie's life difficult, but it kept her alive. "It's a trade-off," she said, "so let's do it and see if I come out ahead on the deal." Well, she did the dialysis for six years and it kept her alive and generally happy, so I guess she came out ahead.

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In the summer of 2015, though, Stephanie began again having trouble walking. Again, it seemed to take a long time for the medical experts to figure out what was wrong, and she endured several rounds of tests and several appointments with assorted specialists, to no real avail. The doctors were stumped, until a cardiologist gave Steph a diagnosis of Peripheral Artery Disease (PAD).

PAD is a fairly common side effect of diabetes, and when the doctor said "fairly common" we wondered why the diagnosis had taken months. Cutting the medical system some slack in hindsight, maybe PAD is not all that common in someone so young as Stephanie; she was 45 at the time.

What's Peripheral Artery Disease? Restricted blood flow in the "peripheries" — the limbs. In Steph's case, she had clogged arteries in her legs below the knees, especially in her left leg. Reduced blood flow means reduced oxygen, so the muscles in her lower leg and foot weren't getting the oxygen they needed. Worse, Steph also had another serious infection, in the same part of the same leg, and the reduced blood flow made it much harder for her immune system to mount a defense.

For the Peripheral Artery Disease they prescribed anti-clotting agents, and drugs to increase the blood supply and control blood pressure. For the infection, they prescribed antibiotics, and told Stephanie to stay at home. The antibiotics made her nauseous and gave her diarrhea, so staying home from work was anything but fun.

By autumn of 2015, I was bringing her breakfast and lunch before going to work, and dinner every evening. For months, we didn't do anything but stay at home and watch old movies on streaming, or read books or magazines. Walking was difficult and painful, and Stephanie got out of bed only for trips to the bathroom and appointments at the dialysis clinic and at the vascular clinic, where we usually met with Heather, the Physician's Assistant who was better than just about any doctor.

When Stephanie's leg infection wouldn't go away, Heather brought up the possibility of amputation. Steph, though, was stubborn and wanted to walk. "Anything but amputation," she once said to Heather. So they prescribed a more potent antibiotic, and then an increased dosage. All, really, to no avail.

Eventually, x-rays showed that the infection was spreading to the bones in Stephanie's leg, and Heather explained that an infection, once it's in the bone, is almost impossible to stop. It can spread to other bones, and that's not something anyone can survive. Still, even after that, and after months of being bedridden, Steph asked if there was any other alternative. Heather stepped out of the room to consult with her boss the doctor, and came back with permission to try an even stronger antibiotic as a last resort.

That stronger antibiotic soon made Stephanie feel even weaker and sicker. A few weeks later, on the way to Heather's office for our next appointment, Stephanie said in the car, "I don't feel any better, so I'm expecting today will be bad news." And indeed it was.

Heather explained that despite everything, the infection had advanced, not retreated. It's a moment I remember vividly. Stephanie pursed her lips for a few seconds, and then without a tear, without even a quiver in her voice, she said, "OK," Stephanie said. "Book me for an amputation."

We had already talked about it at home, of course. Talked about it a lot, and Stephanie had already weighed everything in her mind and made the decision. She was scared but always pragmatic.

On the way home from Heather's office, she said, "I don't want to do this but I'm going to do this." That became her mantra. We had long conversations about it, of course, but mostly we had short conversations where Stephanie said, "I don't want to do this, but I'm going to do this," and I responded with whatever paltry words of encouragement I could come up with.

Pause for a moment and think about having your leg chopped off — on purpose. You learn to walk when you're a toddler, toddling, and after that you never give walking much thought unless you've sprained an ankle or otherwise injured yourself. You want a beer? You stand up and walk to the refrigerator, and then you walk back, sit down, and sip your beverage — unless you can't walk to the fridge. Unless you can't walk to the bathroom, or to the car, or to the grocery store, or anywhere at all.

Stephanie never said, "I can't do this." She only said she didn't want to do it. I was impressed with her courage then, and I'm still impressed remembering it years later.

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Before a major surgery, you're supposed to have a pre-op appointment with the surgeon, and we appreciated this particular appointment. The surgeon was optimistic as heck. Maybe it's part of a surgeon's job to build up a patient's spirits, and maybe patients filled with optimism fare better in the operating room. Well, this guy built up Stephanie's hopes, and mine too.

He answered all of our questions enthusiastically, with just a hint of a smile. He told Steph that after the amputation there would be several weeks of recovery, and then she'd be measured and fitted for a prosthetic leg, and after some physical therapy she'd be walking normally on her new prosthetic. "The technology is really amazing," he said — a line we never forgot. He probably slipped the phrase "if there are no complications" into the conversation, but you never really expect to be the case with complications.

We left that doctor's office feeling quite confident that not only would the amputation be best for Stephanie's health, but that she'd probably recover quickly and soon be walking, perhaps dancing on her new prosthetic leg. Years later, I'm not going to say anything disdainful about that doctor. He wasn't lying. He probably believed every word he said. He wasn't trying to sell us a crappy used car. I'll just say, Steph's amputation wasn't without complications.

Next up: The amputation, and the aftermath.