Cramming four flights, three states, and two surgical consultations into three days would be a challenge for anyone, but moreso when you do it from a wheelchair.
Gets even more challenging when you’re also processing some pretty life-changing information, because the folks at University of Utah agreed with Stanford: Elmo-the-knee-replacement, about to be ejected by a nonunion fracture, can most likely be saved.
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.
Suzanne and I boarded a Southwest flight to Salt Lake City only hours after wrapping up the Stanford consultation, so I was still stunned. I’d given up on Elmo, prepped myself to greet the new distal-femoral implant on July 28…and now I was hearing that one of the best nonunion fracture docs in the country thought my leg eminently salvageable.
I was inclined to call a realtor, put the house up for sale, and get things moving NOW…before he had a chance to change his mind. Doc David was adamant, though: He wouldn’t accept my request to operate until I’d had a chance to think, and to seek additional options.
I’m trying to wrap my head around it. Nearly two years ago I wrote, “No thanks. I’ll walk,“ which now seems completely unreal. Yet these guys are saying that in a few months I could be writing that story all over again.
The day before leaving, I’d nearly canceled this trip. I didn’t think it would change anything, and I knew it would be grueling. Now, all the way to the hotel and up to my room, all I could think was, “Whew.”
Let me just say one thing about wheelchair accessibility, and then I’ll get back to the story: Be skeptical. There are hotels out there that think a room on the third floor with narrow paths, bathtubs instead of roll-in showers, and electric outlets at the back wall of a wide counter constitute “handicap” access. I called our Salt Lake hotel–Extended Stay America Sugarhouse–twice, explained exactly what I needed, but spent a miserable night not getting it.
Sorry if I soaked your floor showering outside the bathtub, guys, but I was hot, sticky, and needed a bath. Next time, build a roll-in shower.
University of Utah Orthopaedics Center is a huge complex, getting huge-er with construction, and a brisk respite from the sweltering Utah sun (it was about 100 degrees outside).
Like Doc David at Stanford, the UofU trauma team listens and makes time for you. A guy named Mark had taken my history over the phone the previous week and made sure I slid into the schedule that would fit my travel plans. Once I arrived, five different medical dudes reviewed my case, ordered X-rays, and spent close to three hours talking with us about options.
Bottom line: They agreed with Doc David. Doc Justin and Doc Thomas suggested a slightly different approach, but definitely agreed that the proposed Zimmer distal femoral implant would be a mistake.
They, too, felt there probably was a very low-grade infection in the leg, even if the blood tests didn’t show it and my leg didn’t feel hot or swollen (until recently).
Doc Justin proposed the same dual surgical schedule, with “open biopsy” to determine the nature of any infection. In the two weeks or so it would take for the cultures to show results, they’d pack my leg with antibiotics and watch it carefully.
If the cultures showed infection, the antibiotics would be modified to kill the bugs. Once clear, we’d go to step two: Aggressive autologous (me) grafting after enlarging the hole to expose fresh bone, and compressing the bones to reduce the size of the gap. “You don’t want to add hardware, anyway, unless you know there’s no infection,” said Doc Justin, “The last thing we want to do is introduce it into your replacement knee.”
The Elmo stories (of Elmo, my replacement knee and then the fight to save him when I smashed my femur) have been going on for more than two years now. People ask to read them start to finish, so I’ve set up this Saving Elmo index page to let you view the whole series in one swell foop.
Where Doc David proposed taking loads of marrow from the back iliac crest(s); Doc Justin thought harvesting from the insides of my thighbones offered superior growth potential.
Doc David would add a new plate to stabilize things. Doc Justin would modify Elmo to contain a rod going up the center of my thighbone, reinforcing the bone all the way to the top of the femur. That would minimize the need for additional rods and pins, and work with a new, stronger plate replacing the existing.
Like Stanford, UofU was taking a holistic approach. “We have a four-session class, Build-a-Bone, that teaches patients about nutrition, exercise, and other things they can do to accelerate bone growth,” they said, “We want you in those classes.”
Scott-the-Scheduler (schedulers are very important people in the surgical world, kinda like project managers in my line of work) talked about how things would proceed and what I’d need to do. And the whole team paid close attention to finances: Nope, this would NOT be a cheap salvage operation. They wouldn’t be able to give me an estimate until the docs settled on a final plan, but I had a feeling we were still in “you could buy a nice house” territory.
“We’ve worked with Kaiser in the past, and they do support what’s called ‘gap coverage,'” Scott told me, “That’s when your requirements are beyond what Kaiser can provide, and I think you qualify. You have a confirmed, serious nonunion fracture and a high risk for above-the-knee amputation down the road, not a great outcome. It’ll be a fight, but that could swing your coverage.”
It occurs to me that, if the plate in my leg breaks in Utah, I’ll need immediate emergency repair work at the best local facility. Kaiser covers emergencies wherever you land. Hmmmm…anybody got a hammer?
Both Stanford and University of Utah felt that I’d need to move to weightbearing on the newly-grafted leg as soon as possible, to get lots of nutrient-rich blood moving through the area and kickstart those little osteoblast guys, the ones without the shirts.
Whatever happens, needs to happen fairly soon. X-rays showed that the plate holding The Leg together is bending back, the reason I’m suddenly bow-legged on one side. “That’s the plate, about to give way,” said Doc Justin.
The only way to prevent that is to stay off The Leg. I’m back to non-weightbearing, which makes living in my house a real problem. Unless I can figure out how to do stairs on one foot, I’ll need to move somewhere safer. Utah, maybe.
“If you want to proceed,” Scott said, “The next step is to send me an email and let me know. I’ll return it with a list of things to consider and some places to contact.”
I sent the email the day after my return.
So my pre-op meeting with The Doc, on Wednesday, takes on a very different complexion. I’m not sure how to handle this; I don’t want the guy who got me walking again, intervened to save me from implant, and did what Doc Justin called a “meticulous, meticulous job” on reconstructing my shattered femur–and is just damned good with patients–to feel I’m dissing his work.
Kaiser, too, has been wonderful. But armed with the opinions of two top trauma centers (7/19/17: Make that four now), I’m not willing to accept Kaiser’s end-of-the-line proposal.
It’s time to make a more aggressive attack on that hole in my bone, not time to give up.
I hope Kaiser and The Doc see it that way, too. Keep your fingers crossed.
The Saving Elmo series covers my adventures after crashing to the ground on Elmo, my replacement knee, sustaining an “open, comminuted fracture of the left femoral shaft.” It’s a tad more dire than it sounds; if my bone doesn’t grow completely back and return me to normal function, there’s a new, more painful, less effective femoral replacement in my future…with eventual amputation.
If you want to follow along on the journey, try these posts: