Long time no write. Sorry about that. 😉

When last we left our intrepid surgical guinea pig, Cynthia-the-pincushion, she was on the eve of the final finito finale FINAL surgeries to save Elmo.

Verdict: So far, so good.

Thanks for reading, and good night.

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.

—————(sounds of snoring)——————–

I’m sorry; did you want something a little more…detailed?

OK, but remember: You asked

I left the Walnut Creek-thank-heavens-it’s-really-accessible Marriott on Monday morning (10/16 for those of you who track such things), grabbed a Lyft to the Kaiser Walnut Creek hospital and wheeled blithely into pre-op…

…where I stayed for the next four hours. Turned out Dr. Dan had another emergency ahead of me, so I hung out on a gurney, wrapped in one of those Bair Paw paper sack thingees that look utterly useless but should be installed in every chilly bedroom in America. Heavenly, controllable warmth about like a grandma’s hug…

I awaited Surgery #1 (S#1) of an anticipated THREE bloody chop-ups this week. In S#1, Dr. Dan and his team would butterfly The Leg and meet Elmo in the, er, flesh for the first time. They’d be looking for any reasons–like infection–that indicated Elmo and my body needed a divorce, and ensure that all their practice runs with Elmo’s hardware would actually work with the real deal.

If things looked copacetic, and Elmo and The Leg were still madly in love, Dr. Dan would proceed with “Cleanout.” He’d literally unscrew The Leg and leave all its various busted components awaiting further knifework.

That means he’d remove all the original hardware holding the fracture together, setting the bone fragments free. His crew would inspect what remained, take biopsies, and pack enough antibiotics into the various fissures and crevices to plaster the Golden Gate Bridge.

Then they’d stick me in a hospital bed and pipe in a bunch of IV antibiotics to kill stray nasties while we waited for the infection verdict. The Leg would sport a “vacuum dressing” during this period, a nice way of saying “wrap it in cling film to keep stray bits from falling out.”

“There’s not much point in stitching it up,” said Dr. James, one of the surgical team, “Because we’d just be taking it all out a couple of days later” in Surgery #2.

I bore the news that I’d be banging around in bed with an open leg filet with aplomb. In fact, I giggled at bit at the thought of walking to the bathroom, my tendons trailing behind like a bridal train. (Another sign they’re giving you the GOOD drugs)

“We’re ready…” and it began.

I was wheeled into the OR and stared covetously at the surgical LEDs overhead. (really, I need to install those in the studio, they’re gloriously illuminating). I nodded owlishly as someone said, “OK, Cynthia, let’s start this now…” and faded to black.

I woke up a few hours later in recovery, surprised to discover I was missing a tongue. In fact, I was pretty much a tongueless talking head (don’t ask me to explain that, it made perfect sense at the time).

The post-op folk were amused; apparently I’m the only patient who’s ever gone looking for her tongue after general anesthesia. It would seem that I continue to escape the norm. Ah, well.

Post-op

After five leg surgeries, I’m pretty much a veteran; I peacefully drifted as they wheeled me to my new hospital accommodations, waving to passersby, furry elves, and small flying vampires. Two very sweet grizzly bears pushed everything into place, smiled encouragingly as they checked The Leg, and asked if there was anything else I needed.

Uhm…could someone bring me my tongue?

(general hilarity ensued)

Down the hall a man was screaming, “And it didn’t F******* WORK, did it?”

Don’t even WANT to go there…mine will WORK.

Dr. Dan wisely waited for me to achieve slightly more rational thoughtlines, then appeared to announce that things had “Gone Very Well.” I noticed a few silver hairs among his thick black locks I hadn’t noticed before. It aged him a bit..maybe as old as…16?

I hoped I hadn’t put those hairs there. I needed him young and vigorous to finish fixing my leg. And to find my tongue.

Dr. Dan said there was a LOT more scar tissue than they’d thought so they spent a lot of time with weedwhackers or somesuch, clearing it out.

“You may never regain a full 90-degree range of motion in that knee,” he said somberly, “It’s been too long, more than a year, since the injury. There’s just too much scar tissue pushing the knee components together.”

Drat.

Somewhere in the back of my mind is the notion that I should be getting pretty steamed that it took the Kaiser system 13 months and a lot of battles to do the right thing. If Kaiser’s delays permanently affect my mobility, I’ll have to deal with it…but one thing at a time.

For now I’m activating the effective patient mantra: Positive, alert, compliant, firm. When you’re dependent on caregivers for your next bedpan, stick with the mantra because it gets you a LOT farther than anger, threats, and whining. 

“Right now,” agrees Dr. Dan, “Let’s focus on getting the bone healed. So far we’re right on track. Once you’ve got a good, strong femur we can talk about increasing your flexibility.”

Agreed. We have The Plan. I tapped out a few texts to let people know I lived through S#1, and went back to find my tongue.

On Wednesday, the most-feared infection cultures came back negative, so Dr. Dan stopped by to change The Plan: Let’s do everything in Thursday surgery #2, instead of spreading it out to three.

“OK, Doc,” I said blearily, “Found my tongue yet?”

Dilaudid is a wonderful thing. I settled back to await surgery in the morning.

Kaiser plays keep-away

Only one sour note: The Kaiser social worker stopped by to make me feel better on Wednesday night.

Here’s a clue: If you’re a Kaiser HMO member, and you want to feel better, run like hell when the social worker comes.

“We’re still debating whether you’ll qualify for rehab after your surgery,” she burbled brightly, “Medically, we might just discharge you on Sunday.”

Go home on Sunday? To PORTLAND? To a plane with Spatchcock of Left Leg served up on my wheelchair, dripping gravy and blood and who knows what? To a box in an alley? Clue: Marriott probably doesn’t have rooms for guests still leaking their IV fluids… 

Thanks to that nice social worker, I spent the night before my big surgery certain that Kaiser would be dumping me out on the Walnut Creek streets before the betadine dried. Me, lying on a gurney (for which Kaiser charged by the hour), trying to thumb a ride home.

Leaked more than a few tears that night. 

In one especially lurid scene, I wearily poled my gurney up a mountain on the coast highway, begging nearby motorcycle gangs to give me a push…

Look, Kaiser, do NOT tease your patients about being evicted in their jammies when they can’t do much about it. It isn’t nice. Really.

“Who the heck told you THAT?” said my (now-favorite) nurse after my anxiety-ridden night, “You should have been resting up for the big day! Of COURSE you’re going to a rehab center when we discharge you. You won’t be in any shape to travel for weeks. Not medically stable, in a lot of pain…they CAN’T send you home. Trust me on this. Please relax.”

First time in my life I was happy about “a lot of pain.” Did I mention that I like nurses better than social workers? 

The magical disappearing veins

One good reason I’ll never mainline any street drug: Show my blood vessels a syringe and they flee the scene, forcing the phlebotomist to play painful hide-the-needle games. For a Very. Long. Time.

Ouch.

When you’re in hospital they need blood for just about everything (I’m convinced hospitals have a sideline business selling vintage corpuscles to vampires). By Thursday I’d been stuck maybe 4,320 times and my veins had gone on permanent leave of absence.

NOBODY could find a vein that worked and my arms had turned beguiling shades of mauve, puce, and black from all their diligent efforts. The closest anyone had come to actually getting a suckable vein was two tries (and I nearly gave that lady one of my cats as a thank you).

The big surgery would require two (TWO??) stable IVs: One for the various drugs and fluids replenishing whatever the heck Dr. Dan needed, and another for potential blood transfusions. The anesthesiologist examined my arms, shook his head, and decided to place both IVs himself.

He missed. And missed again. The phlebotomist snickered, earning a glare from our beleaguered gas-passer. I kinda chuckled and his eyes swung to mine. I remembered that it was MY veins that had taken a powder, and hunkered down into the sheets.

“Let’s put the patient out and try again.”

I assumed it worked; I woke up with big tubes in my arms plastered with “DO NOT REMOVE” signs, and a truly spectacular purple bruise on the left.

The New Plan would open up the top half of Elmo and drill a hole up his backside. Dr. Dan’s team would slide a reamer into the hole (I had visions of pipe cleaners or bottle brushes, but I’m assuming whatever they used was a leeetle more sophisticated), and start hollowing out the bone from the INSIDE.

Say it together: Eeeeeeuw!

They want the inside goo because they need to make room for subsequent hardware, but also because it’s my very own live bone graft, exactly what we need to jumpstart healing in the hole above Elmo. And, since all these surgeries have increased the “defect” (AKA bonehole) to walnut-sized proportions, they’d need a LOT of it.

Dr. Dan would carefully husband the harvesting, mix it with some kind of super bone fertilizer from Medtronics called INFUSE. That’s a form of (get this) recombinant human bone morphogenetic protein-2 (rhBMP-2), that’s said to greatly accelerate new bone formation.

Or in other words, Dr. Dan was mixing up the Muggle equivalent of Skelegro.

Having concocted my very own, personalized Skelegro, Dr. Dan and the rest of the team would  run rebar up inside the entire femur. Technically, they call it intramedullary nailing, but it essentially replaces the removed bone in the center with a thick metal rod, pinned in place at the very top of the femur. A bolt or two on the other side of Elmo would hold it in place at the bottom.

The new “nail” will reinforce the busted bone from the inside, making it a lot more stable than the old plate nailed to the left side of the bone. Once the nail was in place, they’d jam-pack the remaining space with as much Skelegro as it would hold.

Then we wait a couple of months–takes that long for bone to start growing–to see if it worked.

Dr. Dan showed up after I awoke, looking a bit walleyed. “First, let me say I’m really happy with the results; we’ve got great fixation, a really strong repair, and we did just about everything we wanted to.”

“What I’m not happy with is that you’ve got barely 30 degrees’ flexion in that leg; there was just so much scarring. But if I had to pick between a broken femur that won’t heal in a leg with a flexing knee, and a healed femur with a stiff knee, I’d pick that last option.”

OK. Me, too. Check.

“I mean, it was really tight, getting that rod up your bone. REALLY REALLY tight. We thought we’d have plenty of room but the scar tissue almost defeated us. It was so tight I wasn’t sure we’d make it…but we did. It’s done.

“Just don’t ask me how we’d ever get it out of there if you wanted it out.”

I won’t. Trust me on this. Check.

Dr. Dan nixed using a leg brace, making this the first time since September 2016 that I haven’t wrapped my leg in neoprene. Yay.

“Your leg is already too stiff,” said Dr. Dan, “The last thing we want is to immobilize it and make it stiffer, so please, only use the brace if you just absolutely have to.”

No brace. First time in 14 months I haven’t worn one. Feels like progress. 

And Kaiser did, indeed, bundle me off to another rehab center. Take that, social workers.

Physical and occupational therapy ahead, lots of strength training to try to get The Leg’s muscles out of the atrophy zone.

I may be stiff-legged, I may need an old-lady walker, but by damn I’ll be WALKING off that plane when I go home. I feel it in my bones. (pun intended)

More later. Thanks, all, for the great support.

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: