Zeroing in and leveling out

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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?”

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.


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:

Happy Crashiversary, Elmo

September 18th, 2017|15 Comments

So how did you break your leg?

August 10th, 2017|2 Comments

View from the mountain

August 4th, 2017|4 Comments

The ravell’d sleeve of care…

July 26th, 2017|6 Comments

Test: Can you spot the cripple?

July 22nd, 2017|14 Comments

Zeroing in and leveling out

July 20th, 2017|34 Comments

Femurs, accessibility, and Utah: Saving Elmo II

July 16th, 2017|14 Comments

Tripping the light surgical: Saving Elmo II

July 14th, 2017|12 Comments

Wheelchair traveler…

July 12th, 2017|7 Comments

Filling up on sweetness, with fragility

July 6th, 2017|8 Comments

Saving Elmo: Sometimes the bear eats you

June 26th, 2017|17 Comments

No place like it…

June 12th, 2017|6 Comments

Driving Miz Cynthia, Part Two

June 5th, 2017|9 Comments

Drivin’ Miz Cynthia

June 1st, 2017|5 Comments

Home-ward bound

May 29th, 2017|10 Comments

Room 15: Paying it forward

April 3rd, 2017|12 Comments

Whippersnapper

April 1st, 2017|5 Comments

The Fortress

March 25th, 2017|9 Comments

On the bone again…

March 10th, 2017|14 Comments

Moonlight at sunrise, with jitters

March 8th, 2017|8 Comments

The wheeled view

March 2nd, 2017|10 Comments

Elmo, Beorn, and the Ferengi’s ears

January 30th, 2017|12 Comments

Cliffhangers, clues, and claying around

November 28th, 2016|7 Comments

8 weeks: Patience for the unvirtuous

November 16th, 2016|12 Comments

Death by chicken

October 20th, 2016|5 Comments

Mr. Desmond

October 13th, 2016|7 Comments

Saving Elmo 4: The Meltdown

October 9th, 2016|13 Comments

Bedpans and reachsticks

October 2nd, 2016|4 Comments

Saving Elmo 2: The Plan

September 29th, 2016|11 Comments

Saving Elmo 1: I fight concrete…and lose

September 27th, 2016|26 Comments

2017-08-22T15:29:26+00:00

34 Comments

  1. Helen Cowart July 21, 2017 at 8:45 pm - Reply

    As always, information and interesting. Thank you for sharing. I would have just taken my first doctor’s word for it. It’s a good lesson to learn, though I am sorry you had to go through it all. Sure hope Kaiser gives you the green light on some financial assistance.

  2. Marilyn July 21, 2017 at 7:35 pm - Reply

    Well done here’s hoping Elmo gets walking and enjoying life again & you’re back in the glass studio sooner rather later❤️

  3. Matt N. July 21, 2017 at 1:58 pm - Reply

    Cynthia,
    I’ve been catching up on your Elmo posts and I thank you for them. Not because of the horrible conditions you are dealing with, but, because the public needs to see a real-life journey of an ‘Out-of-the-Box’ health insurance travesty. Your challenges are not as unique as some in our country believe they might be. And, this sheds the light on the importance of healthcare-access AND coverage for any of us.

    Keep up your stubbornness. Keep seeking answers by the most knowledgeable. Keep tightening the screws on the health system/provider, in your case Kaiser.

    This is a perfect example of a healthcare system/provider who should NOT settle for a patient’s limb-loss when there are experts with new procedures that can provide a great learning opportunity for their own providers. I would love it if they would publicly state how much a person’s limb is valued…or life for that matter.

    Kaiser, and others, also can and will allow for out-of-system coverage when they simply cannot match up to patient well-being.

    — Is it ok to give someone an orthotic implant for their shoe when what they really need is a hip replacement? I think the answer is pretty easy to determine.

    Oh, and btw, I am sharing your posts throughout my social networks with #hashtags and also tagging other people and orgs.

    Looks like the social hashtag #SavingElmo is unused too, hint hint for all others on social media networks.

    Best of luck and I will continue to root for you and #SavingElmo.

    Matt

  4. Elizabeth July 21, 2017 at 8:25 am - Reply

    Entering a comment here to help your cause with Kaiser! You have a gift for writing ( and, it seems, many other things!) Good luck and Best Wishes!
    Liz

  5. Lisa July 21, 2017 at 7:56 am - Reply

    I hope Kaiser does the right thing and learns from the other docs. Learning something new is never a bad thing.

  6. rosanna gusler July 21, 2017 at 4:58 am - Reply

    good on you. that sounds encouraging. heres hoping that they do right by you.

  7. Gayle Howard July 21, 2017 at 2:50 am - Reply

    Wow, Cynthia! I think it would be fabulous if Kaiser Permanente is able to truly help you. Kaiser Permanente was begun by Dr. Sidney Garfield and it has a very interesting history in its evolution. My experiences (albeit decades ago) with Kaiser Permanente were all very very good. Best wishes!!!!

  8. Nancy Goodenough July 20, 2017 at 11:20 pm - Reply

    ”…unless I have a life-changing event like birth/death/marriage/divorce” … MARRIAGE. That’s the one! You can start taking applications for the cause.

  9. Risa Prince July 20, 2017 at 8:16 pm - Reply

    I’ve been a faithful blog reader of yours for as long as I’ve been playing with glass. So I’ve followed your journey in glass and in life for a while. Getting Elmo was enough of a challenge. This femur ordeal is over the top and only because you persisted, at your own expense, do you have the option for a reasonable outcome. This new treatment plan will give you a better quality of life with many fewer long term issues and better long term health, right? How Kaiser cannot easily understand that and agree to cover your treatment is unfathomable. Cone on Kaiser, show us that one insurance company can make one proper decision.

  10. arteclectic2015 July 20, 2017 at 7:21 pm - Reply

    I would tell those insurance bureaucrats that if they don’t help , you have CATS, and …..the crazy art community….I would fear those cats….good luck Cynthia. Never give up.

  11. mira July 20, 2017 at 7:18 pm - Reply

    Unbelievable … I hope Kaiser does the right thing. Hey Kaiser: The leg is medically necessary!!!

  12. Shawn July 20, 2017 at 7:01 pm - Reply

    I was thinking of switching over to Kaiser, so I am following this closely Cynthia! I sure hope they help you walk again!

  13. Bob Heath July 20, 2017 at 6:50 pm - Reply

    Let me see if I’ve got this right. The Kaiser doctors gave you no options other than one that leads to eventual amputation. Wanting to know for sure if that was the best route, you spent your own money to get advice from four leading experts in the field and they’ve all agreed that indeed, Elmo can be saved and that the surgery recommended by Kaiser would be a mistake.

    So, now you’re faced with the dilemma of sticking with the Kaiser doctors and probably losing your leg in as little as a couple of years, or going with one of the experts that you found, saving the leg but quite possibly losing your house and retirement savings. That isn’t the way insurance is supposed to work.

    I wonder if, when presented with this evidence, the Kaiser doctors will reconsider and decide that the approach recommended by everyone else is actually the right approach. If they do though, they owe it to you to let you choose which doctor you want to have do the work. You shouldn’t get stuck with using the Kaiser doctor that said it wouldn’t work in the first place and apparently doesn’t really believe it will. The Kaiser docs may be fine doctors, but you deserve to be treated by someone that has experience in successfully treating fractures like yours and clearly believes in what they are doing.

    It seems to me that Kaiser dropped the ball here and the best thing they can do now is to offer to pay for the correct procedure to be done by a doctor of your choice, even if that isn’t a Kaiser doctor. In fact, I think they should also reimburse you for all of the expense you went to to get expert advice that they couldn’t provide.

  14. Jill July 20, 2017 at 6:41 pm - Reply

    Cynthia, Following your journey with much interest. Your writing style is informative as well written. I will be keeping up on your progress. Thankyou for sharing!

  15. Stephanie G Smith July 20, 2017 at 6:16 pm - Reply

    Cynthia, I have been reading your blog for a very long time…glass and then accident. You write so well and it is always so interesting, but wow what a journey you have been on since your knee replacement and subsequent broken femur. You have shown us so much strength and intelligence on this journey. We all gain through your posts … life throws so much at each and every one of us and you lead by example in how to deal with the “bumps” in life. Thanks for this.

  16. Nancy Bobb July 20, 2017 at 5:49 pm - Reply

    Cynthia, I’ve been following your blog from the beginning and have learned so much about traumatic injuries from you. The impact to your quality of life, challenges to mobility, painful treatments and so on have been so eye-opening.

    I have my fingers crossed that the treatment plan and insurance can all be aligned in your best interest so you can get back to living your life and doing the things you love.

  17. Kerry Collett July 20, 2017 at 5:42 pm - Reply

    Interesting journey. Amazing that there can be such different approaches to fixing your leg. It’s a wonder more advanced techniques aren’t standardized. Seems it’s always a good thing to get a second, third, fourth opinion!

  18. Charity July 20, 2017 at 5:27 pm - Reply

    You are such an amazing writer, Cynthia. I am eagerly following your (and Elmo’s) adventure. I am wishing you so much luck. And that it may all be covered by insurance!! <3 Keeping my fingers crossed for you and sending you all my love and good mojo.

  19. cjgates45 July 20, 2017 at 4:57 pm - Reply

    Whoa….sounds like Kaiser is really lagging behind. They need to step up and help you! Maybe your case will be the impetus that gets them in gear, after all, they aren’t the only game in town. It’s nice to hear about your options…..glad there are some. Best to you.

  20. Tony Smith July 20, 2017 at 4:49 pm - Reply

    THIS!!! is what health insurance is for. A totally unforseen situation that threatens your ability to live a normal life… at home, at work and at play. I hope things work out with Kaiser. If not, we have your back.

  21. Alice Kuechenmeister July 20, 2017 at 4:49 pm - Reply

    Cynthia you have been a fountain of information and inspiriation. I need to have a knee replacement and your saga has helped me make better decisions. I truly hope that Kaiser will also step up and assist you with your needs. You are traveling a very difficult journey yet your eloquent stories are very uplifting.

  22. Haley July 20, 2017 at 4:45 pm - Reply

    Yours was the first glass blog I ever found. I was just looking to make a component for a sculpture. 6 years later I have a glass studio in my garage and have just started learning some casting techniques.

    I have been following along with your Elmo story. I deal with health and mobility issues myself. I hope you get the answers you need.

  23. Terrie Corbett July 20, 2017 at 4:42 pm - Reply

    You are amazing, Cynthia. So many of us are following your journey. Your tenacious spirit in dealing with your injury while unraveling the complexities of multiple Drs’ opinions and the lifestyle changes those choices might bring about, is inspiring and mind boggling as well!
    We are all pulling for you! ?

  24. advicefrommywildernesstherapist July 20, 2017 at 4:25 pm - Reply

    Cynthia, you have a wonderful attitude about your situation. Thank you for sharing your journey with all of us…you are truly an inspiration to others. Stay positive.

  25. Steider Studios July 20, 2017 at 4:20 pm - Reply

    I love your writing style. I feel the emotion and see every word you write in cinematic color. I’m glad the clouds are lifting & hope you know we’re all there in the landscape with you, as you once again travel through a recovery period. I don’t have much to offer, but count me in for help if your insurance won’t help you. Can’t believe you have to stay in limbo until January!

  26. Barbara Cashman July 20, 2017 at 4:08 pm - Reply

    You know your “glassies” have several potential plans ready to launch to help. It’s all on you say-so. Prayers, heart hugs and lots of love are continually sent your way.

  27. Alice Burns July 20, 2017 at 3:57 pm - Reply

    Good luck Cynthia with future work on the leg. It is great to know you have options other than amputation. Your story will inspire others.

  28. Pamela Goess July 20, 2017 at 3:53 pm - Reply

    Cynthia following your blog has shown what an extraordinary woman you are. I pray things work out and will continue to follow your journey to save Elmo!

  29. imaginethatglass July 20, 2017 at 3:47 pm - Reply

    Cyn, I was just telling my DH that your insurance company SHOULD fund this if only for the publicity. Who else is as articulate (obscure medical terms? bah! You can explain that!) and as engaging? I mean, seriously, you are THE POSTER CHILD for insurance to the rescue. Plus you make great stuff. BTW I was trying to show DH your goblets (from the wedding)(ages ago) but couldn’t find a post? Can you help?

    • cynthia July 20, 2017 at 3:57 pm - Reply

      Hi, Cheryl, and thanks! I got a real chuckle out of that.

      I don’t think I ever showed the final wedding goblets on the blog, I don’t think (could be mistaken, it’s been awhile. they’re celebrating their third wedding anniversary today, in fact). But you can see them on YouTube easily enough: https://www.youtube.com/watch?v=ltSswPT0QOU for the Dragon Flagon (Aaron’s goblet) and https://www.youtube.com/watch?v=fFxq4T4kqN8 for the Cat Chalice (Kaitlyn’s goblet)

  30. Diana tillotson July 20, 2017 at 9:24 am - Reply

    A Kickstarter or go fund me is a wonderful idea. Good luck with this difficult decision.

  31. Coretha C Fulton July 20, 2017 at 8:39 am - Reply

    Girl! You are a story and a half! So glad you are getting some positive results from your “second opinions”. Prayers for you and Elmo.

  32. moiratheglasssmith July 20, 2017 at 6:25 am - Reply

    My goodness, Cynthia, what a rollercoaster you are on! When it’s all over, you’ll have to write a screenplay, it will make a wonderful film. Who would you like to play you? Meryl Streep? Tilda Swinton? Julia Roberts? 🙂 Whatever happens, I know it will be a Happy Ending, because you are determined to make the best of any situation you find yourself in. This is the finest and most useful characteristic a person can have!

    Meantime, until the millions from the film start rolling in, and a career as a Hollywood scriptwriter beckons – do let us all know when you start the kickstarter fund to pay for your op. I know I owe you a good deal – there was precious little info available on pate de verre when I started making it, and your writing on the subject helped me more than I can say. I bet there are plenty like me around – and we all have friends….. Wishing you the best possible outcome. xx Moira

    • cynthia July 20, 2017 at 4:02 pm - Reply

      Howling! Tilda Swinton, of course! (My new sorta-tenant, Nathan, said “Tilda Swinton…she gives me the CREEEEEEPS”)

      Right at the moment I have no idea what’s needed or if insurance will/will not cover this. I did get an absolute no-way from my employer about changing insurance plans…unless I have a life-changing event like birth/death/marriage/divorce I have to wait until January. The focus now is on finding a way for Kaiser to cover it under the existing plan. So I have absolutely no clue as to if I’ll need anything. But I’m overwhelmed by the support.

      And thanks for the kind words about the blog–I write this stuff so I’ll have a personal record (and I just like to read me, sometimes), so the notion that it actually helps someone else is incredibly cool.

      –cynthia

Comments welcome! (thanks)

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