Femurs, accessibility, and Utah: Saving Elmo II

>>>Femurs, accessibility, and Utah: Saving Elmo II

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.

I’ve been informed that these posts might be a little TOO open, but since the fall I’ve been trying to chronicle Elmo’s adventures as completely as possible. Seems a tad snarky to stop just as it’s getting interesting.

Still, if this is just plain TMI, stand by: Glass posts coming shortly.

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.

check-in scanner at University of Utah Orthopaedics

OK, so I’m ALWAYS a gadget freak, and this one was cool: A little bucket-like device that scanned your palm to ensure that you’re really you. It’s the way they check in at this place.

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?

(Just kidding)

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:



  1. Sandy July 17, 2017 at 9:48 am - Reply

    I love it that you are worried about us in the cyber world reacting negatively to your shariing–if you’re willing to share, I am eager to read!
    An accessible room is a roll in shower–next time take nothing less than that! Shame on the hotel for not meeting your needs. double shame!

  2. Coretha C Fulton July 17, 2017 at 3:16 am - Reply

    Love to read your blogs, Cindy. Am praying that Elmo can be totally salvaged and you are up and around ASAP!

  3. kathryncecelia July 17, 2017 at 1:43 am - Reply

    This is so exciting. You are on the verge of something wonderful. I’ll pray it works out just that way. Love your positive attitude. You would not have gone on this trip if you were a quitter…you are a positive survivor.

  4. Island Fused Glass July 16, 2017 at 6:14 pm - Reply

    Such good promising news!! Love these confident doctors, they are the best in their field and for good reason.

  5. Diana tillotson July 16, 2017 at 4:19 pm - Reply

    Your can do attitude is refreshing. I look forward to hearing about your progress and don’t think it’s TMI. Once you get settled in the hospital. For the final surgery (I pray) I’d love to have your mailing address so we can send you funny little things so you know we’re thinking of you and maybe put a smile on your face on a tough day. Di

  6. Gloria Badiner July 16, 2017 at 9:38 am - Reply

    Dear Cynthia,
    Please continue to document. I value your experience. At the risk of “being too sharing” my stepmother broke her neck in a traumatic motor vehicle accident. She was left a quadriplegic with a small amount of movement in one thumb. When offered nursing care she said no thanks I’ll take rehab and walk again. We saw the eye rolls, the offers of counselling for her and the family, but her will persisted and we had her placed in Mary Free Bed Rehab. The wrap-up here is she worked hard everyday and was able to eventually stand and walk with a walker. She got herself to dinner in assisted living, did her makeup and danced a Valentine’s dance with my father. These are real quality of life issues and medicine is more art than science when pared with the human spirit.

  7. JoAnn Wellner July 16, 2017 at 9:23 am - Reply

    No doubt your posts help you to work your way through this “situation” you are in, but I find them extremely interesting in may ways. I see your strength, intelligence and determination in these posts. I see the positive aspects and the frustrations of our medical system. I see the nearly impossible hurdles that those in wheelchairs have to deal with all of the time. I see that you have family and many good friends who care about you, for example Rox and Bob. Wishing you the best in this next stage of your battle to save Elmo. Keep the posts coming!!!

  8. Connie Gates July 16, 2017 at 9:01 am - Reply

    I enjoy and admire your honest and open dialogue—including the gory (realistic) details of your journey. You have me hooked and I look forward to hearing about your progress. More positive thoughts coming your way!!

  9. Stephen Richard July 16, 2017 at 8:52 am - Reply

    Fingers on both hands definitely crossed!

  10. Cheryl Sattler July 16, 2017 at 8:27 am - Reply

    What Ellen said! I love the way you express yourself and hope it helps you process what you’re going through as well. Xox

  11. Rinee July 16, 2017 at 8:20 am - Reply

    Keep the posts coming, Cynthia, as long as YOU are comfortable sharing what’s gong on. There are oodles of us wanting to know how you are doing. We care.

  12. ellen abbott July 16, 2017 at 7:30 am - Reply

    who says your posts are too open? bullshit. if they don’t want to read about what you are going through, they can just not read but criticizing you for it is bullshit. I, for one, am following closely. and yay for the good news.

  13. Zoe Topsfield July 16, 2017 at 6:59 am - Reply

    Ah- I must be a lover of the gory details – hanging on every wordCynthia dear. Certainly nothing has been fractured in your writing skills. So thrilled to read the update sitting here in the UK.

  14. Irene Gates July 16, 2017 at 6:06 am - Reply

    You keep on,keeping on….pay no attention to any naysayers,you are not too open to those of us you are inspiring.I am originally from Utah;so glad you are seeing docs at u of u,they are the best!

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