As far as saving Elmo (my knee replacement) is concerned: We didn’t. Barring miracles, he becomes a biohazard on July 28.
“This should have worked; I’m out of options,” sighs The Doc, looking sad, “I’m so sorry, but I want you to see Dr. Jack, our traumatology expert. Maybe he’ll have some ideas.”
I head to the other side of town for Dr. Jack’s “fracture clinic,” and am wheeled past curtained exam areas full of busted arms, toes, clavicles. “Dr. Jack wants me to put you in a private room,” the nurse confides, pushing me into a bright, sunny space with lots of windows and a locking door.
“Should I get up on the exam table?”
“No, I don’t think that will be necessary,” she says brightly, and leaves.
On Friday night, Sept. 16, 2016, I fractured my left femur just above Elmo, my replacement knee. I lived in a wheelchair, facing hip-high amputation of my left leg, for about two years while I fought health care bureaucracy, cost-conscious HMOs, and myself to figure out a way to walk again. (Spoiler alert: Elmo won!)
I documented my adventures in remobilization in this blog. They’re awfully self-indulgent, occasionally icky, and probably only of interest to me, but on the off-chance that they help someone else with a catastrophic injury, I’m keeping them together here. If you don’t want to read them, that’s OK; I still love you. If you do, you might want to start from the beginning, on the archive page that lists all posts.
Dr. Jack-the-Idea-Guy comes in, shakes hands, and sits down, trying to be delicate. “I know this isn’t what you want to hear,” he begins hesitantly, “But I don’t think there’s anything we can do for you. The bone isn’t healing, and we can’t get good fixation. It’s starting to destabilize; the plate is bending away from the bone.”
“If it was a stable fracture,” he continues, “I could say, ‘let’s get some bloodwork, let’s see what’s preventing growth, let’s explore some other options, let’s reset that plate and try again.’ But it’s not. I’m afraid that any additional surgery will just weaken the bone and make the failure worse.”
Yep. That is definitely NOT what I wanted to hear.
“You need surgical revision, a distal femoral implant. It’s the only option that makes sense, and it will get you back to walking for the first time in months. You’ve already been in a wheelchair for nine months; that’s really hard on your body. We need to get you up on your feet.”
“But when the implant wears out, the remaining options are…amputation and what else?”
“Amputation. We can try to do a second implant, but they’re usually not very successful. But,” he says encouragingly, “It’s possible that by the time you need amputation you’ll be older, maybe as old as 80, so it won’t be as critical. I’m sending you back to The Doc, and he can give you more detail; I don’t do those revisions, he does.”
We spar for awhile; it seems incredible that there is simply no way to grow this bone when I’m reading about so many alternative treatments in the NIH archives. But Dr. Jack is adamant: None of them will work for me.
“In the meantime, is there anything I can get you?” he asks, “A new brace, maybe?”
So much for Idea Guy.
June becomes a month of firsts. First time back home. First time with the cats piling up to sleep on me at night. First trip to a restaurant on my own, first time crossing a downtown street, looking for curb cuts that aren’t so steep they tip the wheelchair backwards. First time taking twice-daily showers and clambering up stairs with a busted leg. First time making glass in nearly a year (thanks, Bob). First time attending a conference–BeCON–with wheels on my backside. First time negotiating a farmer’s market in a wheelchair.
First time I speak of amputation as “when” instead of “if.”
“What, really, is the lifespan of a distal femoral implant revision thingee?” I ask The Doc.
“No one knows, really, it’s relatively rare and there don’t appear to be a lot of common factors in the failures,” he answers, “75 percent of patients make it to five years, 63 percent to ten. About 50 percent get to 15 years, 36 percent to 20, and 28 percent are still going strong at 25 years.”
Somewhere, in the back of my mind, God of Adventure is reminding me that we had a 70 percent chance of saving Elmo. Shut up, I tell him fiercely.
“…And if you have the surgery at the end of July,” he continues, “You’ll probably be walking–maybe just with a walker–by mid-October. Remember, we gave you three months before and you were walking independently in six weeks. This recovery will be harder–you’ve lost a lot of muscle mass–but you’ve got a really great attitude and a lot of determination; I think you can do it and be happy with the results for a reasonable time.”
My really great attitude at the moment is mostly, “well, this sucks,” which I doubt is what he had in mind.
Timidly, I broach the unthinkable. “I know the lower down the amputation, the more success with prosthetic limbs. Would it make sense to do one now, I mean, uhm, chop off The Leg lower down instead of the implant, to prevent the implant from chewing up even more bone? That way there’d be more leg left, I’m still young and can build up strength with a prosthetic…”
I don’t look down as I’m saying this; I’d probably be the first human to see five little piggies on my left foot, glaring hellfire at me. I wish I’d gotten them a pedicure.
But The Doc doesn’t think so. “If we were talking below-the-knee amputation, that might make sense. In your case it wouldn’t buy you much–there still wouldn’t be enough leg muscle to really drive a prosthetic successfully. Artificial limbs require a lot more energy than you’d think. Besides, you still have a lot of active walking time even with the implant, so let’s not go there yet.”
Yet. I know I’ll be walking after the implant, but…how long?
“That’s the million-dollar question,” he sighs, “And I just can’t give you a good answer.”
Insurance doesn’t cover a second opinion, or a third, but The Doc promises to support that quest in any way he can. It’ll be out of (my) pocket–dontcha just love US healthcare?–but already my records and images are in the hands of two specialty orthopedics clinics, and on the way to a couple more. I tried NIH, hoping they’d have some kind of miracle thing, but mostly discovered that they don’t return calls.
I have until July 28 to find a better solution. I could postpone the surgery, of course, but the plate holding The Leg together is obviously bending; I’m starting to go bow-legged on one side. If it snaps, the situation could change fast…for the worst.
“We’ll keep you on the OR schedule for July 28; if you find a better solution, you can cancel,” he says, “In the meantime, stay off The Leg as much as you possibly can. We need to keep that plate intact.”
I gulp, thinking of all those stairs in my house. I only just got home; maybe it’s time to invest in one of those rich-old-lady-stair-chairs.