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.

Izzie

Stephanie has been gone for a year and a half. My pal Joe from back east moved in with me in November, but he moved out again in February; back to Pennsylvania. And now, Stephanie's beloved housecat Minky has left the building, so there's no-one in this apartment but me. The only sound is my keyboard clacking, occasionally a podcast, and me talking to myself. For the first time since meeting Stephanie in 1997, I am alone in the world, without even a cat to pretend is a friend.

By nature, I'm an introvert, or more accurately a hermit. My social skills are nil, and solitude is a good thing … for the most part. Without Steph, though, Minky provided my base minimum companionship. That cat was here, occasionally on my lap, and that made life without Steph a bit more bearable.

Things are gloomier without Minky's specific cat-personality, her unique noises and behavior that told me what she needed and what mood she was in, and all the ways that cat and I semi-communicated. Every time I looked at Minky, I remembered how much that cat  meant to Stephanie. And I liked Minky too, and Minky liked me, so of course I miss that fabulous fluffball.

Distinct from missing Minky, though, I miss having a cat. It's strange not occasionally seeing something move out of the corner of my eye. It's unpleasant not seeing a cat walk by, usually in slinky 'prowl' mode, on her way to who knows where. There's never an unexpected cat cacophony crashing in the next room, as the cat accidentally knocks something over. We have an ample supply of cat food and cat litter, but no supply of cat. Minky can't be replaced, but we have a job opening for a feline.

I've filed a form at a local rescue shelter, and my preference would be a cat who's full-grown, laid-back, and low-energy — like Minky, and like me. The shelter has a brief description of each available cat, and I'm most intrigued by a five-year-old cat named Izzie, who's described as "very shy with new people and will need several weeks or longer to adjust to a new home."

Well, I'm very shy myself, so I can relate to an urge to hide in a cardboard box for weeks at a time. Lots of critters love just about anyone, but if a cat takes a long while to warm up to you, then it means so much more when she finally jumps into your lap!

After name and address, phone and email, and a few questions about the apartment (messy) and whether there are kids (nope) or other pets (nope), the application's last question was, Anything else you'd like us to know? My answer was, "I want a cat because my wife died, and my cat died, and I'm lonely as hell."

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"Congratulations, Doug!" says the email, received only a few hours after I filed the form. "You are approved to adopt from  Madison Cat Project." The note said I'd soon be contacted by Izzie's foster family for a meet and greet, and indeed, I was contacted a few hours later, and met Izzie the next day. Well, sort of "met" her — like I said, she has shyness issues, so I didn't hold her on my lap, or even touch her. But I saw her across the room, and knew I wanted her.

Izzie is a cat with a history. She was born in China, immigrated to America with her 'owners' (she even has a cat-passport), but for reasons unclear her people had to return to China without her, so Izzie ended up at the shelter. And she's shy. Really, really shy.

So I brought her home, and she yowled unhappily all the way in the car. Set her up in the guest bedroom, and she promptly hid under the bed. In the four days since then, I've only seen Izzie's tail, poking out from under the bed.

But I knew she's a special cat, and that I'll need to be patient. So far, things are going well — after starving herself for two days, Izzie has started eating the food I'm giving her, and started pooping in Minky's old litter box. I'm spending an hour or so daily in the guest room that's now Izzie's room, reading a book out loud and in a calm voice, to soothe the new cat's concerns about me. Someday soon I hope to see more than just her tail.

And I'm remembering a short conversation between Stephanie and I, almost fifteen years ago, as we decided to adopt our first cat together and Steph's first cat ever, the cat that became Minky. Stephanie took the responsibility seriously, and described it like this: "We get an adorable cat to keep us company and keep us entertained, and in exchange, we have to keep Minky healthy and happy and safe for as long as she lives." I think all three of us — Steph, Minky, and me — came out ahead on that deal, and all parties lived up to their responsibilities. And now I’m making the same pledge to Izzie, to keep her healthy and happy and safe.

Not 100% certain about her name, though. I might get used to saying "Izzie, Izzie, Izzie" instead of "Minky, Minky, Minky," or I might shrug my shoulders and start calling the new cat by the old cat's name. One thing I'm completely sure about, though, is that Izzie isn't my cat and never will be. She's our cat — Stephanie's and mine.

Pandemic 2020

Without a doubt it's the nuttiest thing I've ever seen: This gawdawful COVID-19 coronavirus has been in the news for weeks, and the headlines keep getting worse.

It reminds me of stories I heard from my grandmother about the 1918 flu epidemic. Schools are closing, big-time basketball, hockey, and baseball have been idled, and our local film festival has been cancelled.

You think this is scary if you're healthy, just imagine how scary it must be if you're not healthy. See, one of the major side effects of kidney failure is a seriously compromised immune system, so Stephanie would have been very much at risk in this epidemic.

If Steph was here I would not be going to work every morning — can't be in the office all day and then bringing this deadly virus home to my wife. Nope, I'd have been on leave of absence since perhaps the end of February, two weeks ago. Earlier, if Steph had been more worried than me, but two weeks ago was when the nature and looming threat of COVID-19 became clear to me. So if Steph was still alive, we'd both be sheltering in place here at home, with me occasionally venturing out for groceries in the middle of the night, when the stores are emptiest.

But the vulnerability in that plan would be Stephanie's dialysis. When she was receiving in-clinic dialysis, it was three times weekly, four hours each time in a crowded room filled with other people receiving dialysis. Required. The chairs are close together, sometimes separated by a flimsy curtain, but more commonly not separated at all. With a contagion like this COVAD-19, going in for hemodialysis would mean spending four hours in a breeding ground for the disease.

Other times Stephanie received a different kind of dialysis at home, where she'd set up the machinery and tubes herself. No other patients, no staff, so she'd be much safer from this or other viruses — but she'd still be in danger because sheltering at home isn't really feasible on dialysis. Even with at-home peritoneal dialysis, Steph was still required to go to the clinic at least twice monthly, first for the blood tests and safety lecture, and then a few weeks later to be told the results of the blood test and hear another safety lecture. And some months, she was required to go into the clinic a third or even fourth time, if the staff didn't like the results of that month's blood test.

Every visit to the clinic meant at least ten minutes, more likely half an hour or longer in the waiting room, which was always crowded with people who have compromised immune systems — because everyone with kidney disease has a compromised immune system. Then we'd go in to see a nurse and then a doctor, and a dietician, and a social worker, all of whom work all day with people who have compromised immune systems.

The public safety instructions for dealing with this disease are to wash your hands a lot, stay home if you're feeling sick, and avoid crowds, but those last two ideas are moot, if dialysis is what's keeping you alive. People who aren't on dialysis can be smart and choose not to go to a crowded place during an epidemic. People on dialysis have no choice. So in addition to everyone else's wild but well-founded worries about this new coronavirus, Stephanie would have had extra worries. She would definitely be what they're calling the "high-risk population."

I've been clicking around the internet, to see how this is being addressed at kidney clinics, and near as I can tell there's no solution. Here are two comments (edited for spelling and grammar) from the Dialysis room on Reddit, an open-microphone website:

First comment: This is my nightmare, since I am on in-center hemo. The other patients have people come with them and most spend the four hours in the waiting room. The other day I was watching 15-plus people sitting there waiting during shift change, and thinking that if one person beings it in, everyone will get it.

Second comment: I asked my clinic what the plan is and they told me they won't let anyone in with a temperature over 100.4°. I asked how those people are supposed to get dialysis and their answer was basically ¯\_(ツ)_/¯. Pray if you get sick it's early in the curve, and there's still hospital beds and dialysis machines, I guess. 

That's terrifying. Tell me I'm nuts and I won't disagree, but even though Stephanie is long-gone, I'm worried about how we could have kept her safe through this coronavirus crisis.

For myself, though — meh. I will take what comes. The only value of worry is if it leads to a better strategy, so I've read about this virus, and decided my strategy: I'm washing my hands a lot more often, taking multivitamins, and avoiding crowds. After that, there's no point to worrying, so I'm only worrying about loved ones.

And whether you're worried about COVID-19 or pretending it's nothing, remember what I can't forget, that folks with kidney failure and/or on dialysis — or folks in otherwise weakened health — have even more reason to be frightened.