“For every subtle an complicated question, there is a perfectly simple and straightforward answer, which is wrong.” – H. L. Mencken
Maybe this is about health care; maybe it’s about health insurance; maybe it’s about parenting a mildly mentally disabled adult. Then again, maybe it’s just me trying to get my thoughts in order, because this is one bizarre story. One with a happy ending. I think.
I remember when the whole thing started, as clearly as if it were yesterday. I flew in from San Diego, picked Duckie up from work and headed 2 hours north, into the next State, for a short vacation. That day was the first of the manifestations.
“My leg hurts,” Duckie said.
“Right here.” Duckie rubbed deep on the top of her left thigh.
“You did work an 8 hour day.”
Duckie is a courtesy clerk at the local grocery store. She bags your groceries, loads blocks of salt and dog food into your car, and brings all those carts back to the store. When the weather is nice, she walks the 3 miles to work and back. She enjoys the walk; it’s part of her weight management plan. Besides being a bit overweight, Duckie is in great physical shape. Her normal work schedule is 15-20 hours a week, in 4 hour shifts. Sharing Duckie’s life gives me a whole new appreciation of the varied nuances. of personal interactions: humor, sarcasm, personal boundaries, and kind-heartedness. Sometimes the lines are blurry. It takes a lot of Duckie’s conscious energy to keep on top of everything
To make a long story just a tad bit shorter, the ache in Duckie’s leg stayed. She wiggled, and rubbed, and had little interest in doing any of the vacationy things we came north to do.
I worried. This wasn’t her hypochondriac, drama-filled play for attention that often frustrates me.
I called Duckie’s insurance company to get advice.
“Should I take her to a local urgent care, or should I take her to the hospital’s emergency room?”
“You are out-of-state. The co-pay rules no longer apply. The charges will be applied to her deductible.”
“You mean she can’t get care because she’s out of state?”
“The charges will be applied to her deductable.”
I took Duckie home, to her primary care physician. Dr. Prim poked, prodded, and bent Duckie’s leg. Duckie had no reaction.
“I’m ordering X-rays and an ultra-sound,” said Dr. Prim. “Maybe the leg is broken.”
“But she hasn’t fallen or injured herself in any way.”
“We must rule out a break first.”
I get a disk with the x-ray and ultra-sound.
Two days later, I get a call on my cell phone. It’s Dr. Prim’s office, not her and, hopefully, not her nurse. This is a conversation etched in my memory, because it is so bizarre.
“I have the number for the bone specialist for you.”
“What? Who is this? Why do I need a bone specialist?”
“The X-ray; there’s no break, but it does shows some type of scar or something. In the part of the leg…. Um… the… the part where the lower leg and the upper leg come together.”
Yes, she really did say that.
“The knee?” I say.
“Yes. The knee. She needs to see a bone specialist. I have the number for you.”
Off to see Dr. Bone we go, with Duckie’s x-ray and ultra-sound in hand. Dr. Bone and Dr. Prim are in the same Healthcare Consortium. They share access to patient records and test results. Still, it’s my responsibility to transport x-rays, ultra-sounds, and other types of scans.
“Well, there’s no break, no signs of arthritis, no blood clot,” says Dr. Bone after he prods, pokes, and bends Duckie’s knee.
Duckie returned to work and is walking to work again. Still, she’s complaining about her leg
hurting, only now she points to the knee, not the thigh.
“I can give her a cortisone shot,” says Dr. Bone. “That may clear things up for 6 months to a year.”
“Okay,” says Duckie, which is almost the first thing she’s said to Dr. Bone. For a person who’s strongest skill is her verbal ability, she gets quiet sometimes.
The cortisone shot works. Duckie seems on the mend. As for me, I doubt there’s anything wrong with her knee other than a placebo effect of Dr. Bone’s cortisone shot. A little shot of cortisone never hurt anyone, and if it makes her feel better, I can get behind it. Still, I demonstrate by rubbing my own thigh, how Duckie’s complaint originated. He ignores me.
Duckie does feel better. For a while.
Duckie’s leg hurts. It gets better. It hurts again. The pain is in the front of her thigh, or the back of her thigh, or in her calf, or in her foot, or in her knee; sometimes it’s her whole leg.. It aches, it pinches, it stings, it stabs. Sometimes the pain is constant; sometimes it’s all of a sudden. Duckie never says it hurts as a result of movement. It hurts more when she goes for a long car ride, or works a long day. Sometimes it hurts so bad she wants to cut her leg off. It always hurts most when she returns from a certain someone’s house who is chronically ill and has had knees replaced. Duckie says maybe she needs a knee replacement. It hurts so much Duckie can’t sleep at night. She takes long naps after work and stays up late. I write all this down, so I can remember all the variety of complaint.
Dr. Prim reviews the chart as though she’s never seen Duckie before.
“How are you doing today, Duckie?”
“Her leg hurts,” I say.
Duckie points to a scar about two inches above her knee. “Right here.”
The scar is a reminder of family trauma created by the newly minted teen-Duckie, sneaking off to visit a friend on the other side of a four-lane highway. A scar from the “Jane Doe” that was Duckie, knocked out of her shoes by a Subaru driving home, after an early holiday party. A scar that is new each time it is remembered. A scar that is now over twenty years old.
“I’m ordering a sleep study. I think she may have Restless Leg Syndrome.”
“She can’t sleep because her leg hurts.”
“There’s medication for Restless Leg Syndrome.”
“Can you prescribe a placebo first?” I ask. “She seems to hurt a lot more after visiting a certain someone.” I know I’m grabbing at straws, but psychosomatic seems more plausible than Restless Leg Syndrome to me.
“No,” Dr. Prim looks at me with obvious disdain. “We don’t do that anymore.”
I’ve read a lot about the placebo effect. It’s not a trick. Sometimes it works, and there’s nothing to lose. I keep my thought to myself.
We go for the sleep study.
“Looks good,” the tech says. “Duckie moved her legs a little while she slept, but nothing big. The neurologist will let you know the final outcome, but from all the scans I’ve seen, I don’t expect anything.”
We wait two weeks for Dr. Nerve to call.
“Duckie has Restless Leg Syndrome,” says Dr. Nerve. “The results are with Dr. Prim, along with medication choices. She will prescribe the medication.
I call Dr. Prim’s office.
“The test results are not complete.”
“Yes, they are. Dr. Nerve already told me the diagnosis. I need Dr. Prim to choose the medication.”
“Oh, let me get back to you.”
The next day, I call again.
“The test results are not complete.”
“Yes, they are. Dr. Nerve already told me the diagnosis. I need Dr. Prim to prescribe medication.”
I call the next day.
“The test results are…”
“Yes they are. Dr. Nerve called me three days ago. I know the diagnosis.”
“Yes, yes, here they are. Duckie has Restless Leg Syndrome. Dr. Nerve needs to prescribe medication. ”
“I knew that three days ago. Dr. Nerve sent choices of medication to Dr. Prim. He wants her to make the choices.”
“Okay. Do you want to make an appointment?”
“No. I want Dr. Prim to call the pharmacy.”
Five days after Dr. Nerve called with the results, Duckie has medication. Duckie still wakes up several times a night. I ask her to keep a sleep journal. I take an on-line “dealing with insomnia” course through my health insurance. I give Duckie the exercises. Her sleep improves.
“I’m calling Dr. Prim and tell her I need my meds up-dosed,” says Duckie.
“That’s not the way it works. You can’t just demand a higher dose.”
“This medicine isn’t doing any good. I need to be up-dosed.”
I wonder where she got that term. She does love words.
Duckie calls Dr. Prim and gets the up-dose. I called Dr. Prim to make sure the communication was correct.
“If the higher dose doesn’t work, Duckie needs to come in for blood-work.”
Duckie goes in for blood-work. I get the Gazelle app for my phone, so I can get the lab results delivered to me directly. The results come back with most everything within normal; iron a little low, but that’s normal for Duckie.
Dr. Prim’s office calls and reads verbatim, the same results I received two days previous, except for one thing.
“Duckie needs to see a geneticist. She has a gene for haemochromatosis.”
“We know about haemochromatosis, it runs in the family. What about the pain in her leg?”
“Duckie needs to see Dr. Nerve. Her low iron may be causing the medication to be ineffective.”
Duckie works another eight-hour day. Her leg gets worse. She tells me she lifted four 50 pound bags of salt. I talk to her supervisor about lifting. She says it’s in the job description. I print out weight limit calculations from the OSHA website and take them in to Ms. Supervisor. I point out the impossibility of lifting “shifting-weight” of 50 pounds out of a shopping cart using proper technique. I suggest engineering adaptations are in order. Ms. Supervisor adjusts the requirements.
We see Dr. Nerve. This is the first time we actually see him or speak to him.
“How do you feel?”
I tell Dr. Nerve why we are there. He tests her reflexes, and does some pain tests. All look normal. He puts his reflex-tester-hammer to her check.
“Does this feel cold?”
“What do you feel?”
“Nothing at all?”
Dr. Nerve turns to me.
“What do you think is wrong?” he asks me.
I get out my notes and read them to Dr. Nerve. I tell him about her increased pain after visiting a certain someone who as knee replacements.
“Let’s get a MRI of Duckie’s back.”
It takes a while to schedule because insurance must first pre-approve. We’ve grown accustomed to waiting for tests, waiting for results, and waiting some more.
“Duckie has a herniated L4 disc,” Dr. Nerve tells us. “She needs to see Dr. Pain, a pain specialist.”
“What about physical therapy?”
Dr. Nerve looks stunned. “No one’s prescribed physical therapy?”
“What about her low iron? Dr. Prim says it could impact the effectiveness of the medictation.”
“Low iron can cause Restless Leg Syndrome. I can prescribe a supplement.”
“Duckie has the gene for haemochromatosis.”
“Oh well, then. She has to see a hematologist.”
He writes the prescription for the MRI. I research who is in Duckie’s insurance network.
“Should her work be limited?”
Dr. Nerve sees no reason to limit Duckie’s workload.
Dr. Pain has all sorts of awards plastered on her walls for Physician of the Year, year after year. She plans to give Duckie an epidural of cortisone. I ask about the supplier. Dr. Pain reassures me that she is up to date on contaminated cortisone and never, ever gets supplies from compounders. She’s surprised I know a thing or two.
Duckie works an eight-hour day, again. Her leg hurts more.
“Right here, in this scar,” she says. The scar is slightly red.
We tell the physical therapist. She backs off lunges in her therapy.
“There does seem to be some heat coming from that area. You may want to tell the doctor.”
We tell Dr. Pain.
“I’m just deal with backs, she says. You need to go see Dr. Bone.”
“Should Duckie’s lifting at work be limited?”
“See what you can do off the record. Sometimes a prescription for limitations causes problems.”
Ms. Supervisor says “no,” work cannot be limited without instructions from a doctor. I understand her logic.
We go back to Dr. Bone. With each doctor, test site, and therapist, we fill out the same paperwork, answer the same questions, and provide the medical history and hand over the same insurance card. Each facility is in the same Healthcare Consortium, computer linked. Everyone can read everything. Yet, we keep filling out forms and answering the same questions.
“She could have a bone infection,” says Dr. Bone. “We need an MRI of the leg. If that looks suspicious, we’ll do some more tests.”
“Wouldn’t that show in the earlier scans?”
“Not necessarily. We used to see this a lot with WWII veterans. Most of them are gone now. Let’s take it one step at a time.”
“What about weight restrictions for work?”
Dr. Bone writes a note limiting Duckie to less than 20 pounds. Her job description requires “occasional lifting greater than 20 pounds.” The grocery store adjusts Duckie’s work load and schedules proper lifting lessons.
It takes four days to get the MRI scheduled, three of those are waiting for the insurance company to approve the procedure.
We go back to Dr. Pain for Duckie’s second treatment. I relay Dr. Bone’s suspicions along with his curious statement about veterans. Duckie shows Dr. Bone her reddened scar, which is a perfect circle bigger than a silver dollar; the kind of dollars WWII veterans carried around.
Dr. Pain gives Duckie another cortisone epidural.
I start investigating ‘bone infection.’ Mayo Clinic has an informative and frightening “official osteomyelitis site.”
Duckie’s knee swells up to a 19-inch circumference. Her good knee is 16 inches. I call Dr. Bone. Duckie gets an appointment 3 days later.
“We can relieve some of the pressure with a little “stick,” and we can get a sample and maybe identify the bacteria, if there is any.” Dr. Bone looks at me. Duckie looks at me.
“It might help,” I offer.
I hold Duckie’s hand. Dr. Bone sinks a scalpel into Duckie’s leg.
That’s right. A scalpel sinks about a half inch into Duckie’s leg. Dr. Bone takes a sample and hands it to me for delivery to the hospital.
“I’ve been reading about osteomyelitis,” I say.
“I know, you can find a lot of misinformation out there. I stuck to the official site.”
“There’s an official site?”
“There’s quite a spectrum of treatment, some drastic. What are the chances…” I’m trying to avoid the word ‘amputation’ in front of Duckie.
“None. If the blood tests confirm infection, we’ll drill out what we see as the infected bone and release the tourniquet, check for good blood supply. If no, we drill again, if yes, we proceed. We pack the site with cement mixed with antibiotic pellets, and give intravenous antibiotics for six weeks. After eight weeks, we take the cement out, and check for infection. If it’s gone, we do a bone graft; if there’s still infection, the process starts over. Duckie may require antibiotics the rest of her life.”
The treatment Dr. Bone described matched Mayo Clinic’s official site.
“So am I right that Dr. Pain’s cortisone shot allowed the infection to bloom?”
“Cortisone can lower the body’s immune response. This infection has probably been growing for years.”
On the way to deliver the sample the absurdity strikes me. I start to laugh.
“Did you think Dr. Bone was going to stick a knife in you?”
“No,” Duckie’s eyes grow wide. “That hurt like the dickens.” She laughs, too. Duckie likes phrases from another era, like that. She calls the basement the cellar, and the refrigerator the icebox.
Duckie gets the MRI on Friday. On Monday, I call for the results.
“The results aren’t in yet.”
“They told me the results should get to Dr. Bone on Monday.”
“Oh, wait a minute. Yes, they faxed the results on Sunday, because of the possible diagnosis. Dr. Bone will read the results sometime this afternoon.”
In the afternoon, Dr. Bone’s office called to set up an appointment for Tuesday.
“We are operating on Thursday,” Dr. Bones said, as he entered the examining room.
“How long will the operation take?” I ask.
“About an hour.”
“Is that the actual time she’ll be in surgery, or from scalpel-up, to scalpel-down.”
“We prefer to say, ‘skin-to-skin’,” Dr. Bone grins. “One hour skin-to-skin.”
We saw Dr. Bone immediately after surgery.
“We removed about one cubic inch of bone. The bone is in danger of breaking. Not more than 50% weight-bearing on that leg until the plug comes out. I’ll see you in four weeks.”
We had one more doctor to see. Dr. Infectious. The best doctor of all. I never saw this man before in my life, and for some reason, it was Dr. Infectious who heard what was in my heart. Maybe it was his warm, brown eyes, maybe we both understood the language of the microbes, maybe it was the way he acted like I was the only person in the room, the hospital, the whole world. Maybe the volcano was ready to erupt.
“It’s been more than 18 months. For the love of Pete, you doctors are all networked together by a computer system. How about getting in the same room and talking to each other? How about some problem solving techniques, a little root cause analysis? How about somebody reading the records? This isn’t a TV show like “House,” where doctors almost kill a patient three times before they stumble on a treatment.” Okay yes, that last part was a little overdramatic. It was a long time building.
Dr. Infectious, pulled up all the scans on his computer, he went over the vagaries of the bone mass, the scarring, the ebb and flow of chronic osteomyelitis. The same scans I’d been taking from doctor to doctor really were all there at Dr. Infectious’s fingertips.
“Osteomylitis is documented in Civil War veterans. Back then, bed rest was the remedy. The symptoms went away for a while; activity brought it on again. The body does it’s best to fight off the infection, but slowly, slowly, the infection eats away at the bone.”
Dr. Infectious’s phone buzzes the same text alert as my own. It’s his junior high daughter. He silences the alert. He sits quietly, waiting, as if he’s in a meditative yoga pose.
“Do you have any more questions?” He breathes.
“So the cortisone epidural allowed a microbial bloom.”
“That’s probably what happened.”
He waits, looking straight at me. Undistracted.
I look through my notes, check my memory and come up empty.
“Call me anytime, if you do.”
He means it.
Are there lessons learned here? A silver lining? Dr. Pain must know the side effects of cortisone treatment (lowering of the immune system.) Why didn’t she recognize the symptoms of a bone infection? On the other hand, without the microbial bloom, how long would the infection eat away at Duckie’s bone before it was recognized? what about the herniated disc? What about the low iron, and the Restless Leg Syndrome? Are the doctors going to use the tools and data available at their fingertips. I am a reasonable intelligent person. What happens to those less so? What will happen to Duckie without me as an advocate? I won’t be here forever.
Most important: Where are the Dr. Holdships of the world? The Real Doctors. Like the one who delivered Duckie, the one who knew me, my kids, my husband, and all of our history. The doctor who greeted my husband in the middle of the night, still in his boxer shorts, and gave him medicine so I could sleep at night when I suffered from a severe case of mastitis. Where is the Doctor who knows the Pain, the Infection, the Bones, the Blood, the Brain; the insides and the outsides of my family.
Dr. Infectious tells me an infection like this can have a cascade effect on the whole body. Duckie is home. She is recuperating. That’s a story for another day. A story that makes me wonder where our health care system is headed. A story that makes me say out loud, “How much worse can it get?”
- What is Restless Leg Syndrome? (plushbeds.com)