BANG!! The crutch crashed down onto Elmo. Ouch.
“I’m so SO sorry!” he gasped, taking my hand, “Oh my god I feel so bad! Are you alright?”
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.
I was hanging out in the orthopedic reception area, waiting for my turn with Doc Richard. A tattooed dude with red-tipped dreadlocks had hobbled in on crutches, grumbling at the lack of seats. He’d finally settled in beside me, accidentally stumbled and let go of that crutch.
A simple bang on the knee is minor these days. “Not to worry,” I shrugged, patting his shoulder and proffering a candy box, “Have an Altoid.”
“Thanks,” he said, popping one into his mouth, “Whatcha in for?”
“Shattered left femur,” I said.
“Really?” he grinned, “I shattered my RIGHT femur.” We shared ‘toids and war stories, only his were much better than mine.
“I was dodging bullets, only I picked the wrong direction, got hit on the leg,” he said expansively, “The bullet had MRSA on it, it just ATE my leg. I’m much better now, but they’re gonna keep giving me oral antibiotics for a long time.”
MRSA, the super-staph that is now said to kill more people than AIDS. From a bullet. OK, you win on war stories. Just don’t ask me how I broke…
“So how did you break yours?”
Damn. “I, er, fell down the stairs,” I said, shamefaced at my wimpy history.
“Well, stairs are dangerous too,” he said generously. He looked streetworn and tough, with concentric lines of finely drawn, indigo tattoos crowding arms, hands and legs, and a pair of snarling lips drawn on the sides of his neck. A big scar marred the perfection of his arm tatts, standing proud, stark, and white against cafe au lait skin. Was that from his gun accident?
“Oh, no,” he assured me, “That’s a PREVIOUS gunshot. And that one,” pointing to an even larger knot of scar tissue on his shin,”That was a different time from that. I been shot four times.”
“Uhm…possibly need to stay away from guns?” I suggested.
“No,” he corrected, “I need to stay away from PEOPLE with guns.”
The nurse called his name and he clasped my arm, hard. “Good luck,” he said seriously.
Doc Richard was the last of the four opinions I was seeking in my fight to save Elmo, my beleaguered knee replacement. Number Three, the University of Washington Harborview, had called this morning, letting me know that they, too, had a solution for me, and it didn’t involve the dreaded distal-femoral implant that would eventually lead to amputation.
Distal-femoral implant: I now call that “The Icky Solution.”
Of course, disagreeing with Kaiser’s plan is only the start: Somebody’s got to pay to fix my leg. So far it’s been Kaiser–absolutely no complaints there–but Kaiser is notoriously close-minded when it comes to non-Kaiser doctors. I’ve had to come up with the thousands it’s cost for these opinions on my own, as Kaiser refused to pay.
My employer DOES offer an insurance plan through work that would cover femur reconstruction… but won’t allow me to switch until the first of the year. Apparently it would put things “out of compliance,” unless I have a “life-changing event” like birth/death/marriage/divorce. For some strange reason, losing a leg isn’t life-changing enough to satisfy corporate rules. My only option now is to get Kaiser to admit it can’t fix my leg and allow “gap coverage exception…” or pay for it myself.
It’s frightening to realize how close we can be, even with a great job and supposedly good health coverage, to being forced to choose between losing house and retirement savings, or losing a leg.
A little boy about three bounced on his mom’s lap, over and over, little legs pedaling furiously. “He has CP,” she explained, “And he doesn’t really sleep without sedatives. But he moves this much even in his sleep.” His head was tiny for his body, microcephalic, but his smile and friendly wave eclipsed the room.
“I think he likes you,” she said. I reached out a hand and wiggled my fingers; the little boy grasped it and we sat together, smiling.
“I’m missing a third of my brain,” offered the man in the next seat, “I can’t really wiggle my toes or fingers, but I can make faces.” He pulled his lips wide, smiling, almost to his ears. The boy gazed, wide-eyed with wonder.
Across the room, two women were talking, “My pelvis is broken in three places.” “You poor thing. My back is broken.”
What in the HELL am I doing here with all these desperately damaged people, wasting the doctor’s time on a busted leg?
Oh. Wait. I forgot. Join the ranks, sweetie.
“The doctor is ready for you,” chirped Doc Richard’s cheerful assistant, and we wheeled down the hall. Doc Richard’s a former pupil of Doc David’s at Stanford, comes highly recommended, with the advantage of being local. If things work out, he’d be the least expensive and most convenient of my choices, and from what my neighbor Kim says, he’s a fabulous doctor (he rebuilt her daughter’s ankle).
Doc Richard mostly agreed with his colleagues; Elmo was worth saving and he thought he had a pretty good chance at it. He was less sure about infection as a cause for the nonunion, but open to the idea.
He’d use yet another fixation method after shortening The Leg, a Zimmer plate that promoted biological healing. I asked about putting a rod up the leg, through the knee replacement. “I’ve not tried that because I’m a little leery about introducing something into the implant,” he said seriously, “It’s being done successfully at University of Utah, I just have no experience with it.”
Overall impression: Nice, very smart man with great skills. I liked him a lot. “Let me talk with Doc Justin and Doc David, and I’ll get Dr. Jack on the phone, too,” he promised, “I want to make sure I’m not missing something. If I think I’m the best choice, I’ll work with you on a plan. It could be that Utah is a better option because of their nailing technique; I’ll let you know either way.”
Yep, I liked Doc Richard.
The talk with The Doc at Kaiser this morning had been hard, not because he made it so but because I felt a keen sense of betrayal…mine. How do I reject Kaiser’s plan without also rejecting The Doc? This man gave me back my legs, got me walking when I’d never imagined I could walk without pain again. After I destroyed his gift he intervened and gave Elmo another chance, when another surgeon would have given Elmo the axe.
And he’d proposed much the same solution as the other docs–shorten the leg to press my fractured bones together, reducing the amount my bone needed to grow–but apparently Dr. Jack and Kaiser shot it down.
So who the hell was I to argue with The Doc?
I’m the one with The Leg. Remember that. Focus on The Leg. MY Leg. The Doc may not like what I tell him, but he’ll do right by us.
And he did. He listened carefully, asked questions, expressed skepticism about the possibility of low-grade infection in the bone. “If there really is infection in there,” he reasoned, “You must also assume it’s in the knee, which takes us back to removal…”
He aspirated samples from my knee for culturing–yeeeouch–and ordered bloodwork. If all that comes back normal, the low-grade infection theory becomes less likely.
The first results were out by the time I saw Doc Richard. “It’s in normal range, so I’m not convinced that infection is an issue. Not ruling it out, just want to see some evidence.” (Later addition: The second blood test came back, and it did indeed show evidence of some kind of inflammation. So…not sure where that leaves us.)
I left Doc Richard’s office and grabbed a Lyft home (I’ve stopped driving, for now, because there’s too much chance I’ll slam on brakes with both feet–I do that sometimes–and hasten the demise of the failing plate).
My driver didn’t speak English, but he smiled a lot and got the point across. We sang Cuban love songs all the way home, while my mind drifted, pondering probabilities.
The Doc had promised to talk with Dr. Jack, let him know that three of the top trauma centers in the country disagreed with his findings, and figure out how we go from here. “What they’re proposing isn’t something I generally do,” he said honestly, “I do hip replacements and knee replacements; the kind of reconstruction they’re talking about is outside my area of expertise. But I want you to be comfortable with this. It’s your body. Your leg.”
And at the end of the day, he’s right, that’s what I need to hold onto. I’m not any closer to a solid plan, and I’m frustrated by the bureaucracy of Kaiser healthcare. Yet the clouds are starting to lift, and a piece of the landscape is coming into focus.