“Working” any system implies the system can be understood and made to work for you, but our nation’s unfathomable health care complex resembles a swirling black hole rather than a logical system. We enter at our own risk.

The good news is real people with caring hearts do inhabit hospitals and health insurance companies. The trick is to find those people, understand the rules and red tape they work under, educate them about your needs in a friendly way, and persistently urge them to work on your behalf. You must be obsessive and painfully patient, but if it culminates in a positive outcome involving your health and that of others, it is more than worthwhile.

Too often, though, we must go through hell to get to the promised land.

Members of the Same Family

When the nurses on the hospital’s fourth floor got their first glimpses of my incision following flap surgery, it sounded as if they were in an art museum. “It’s beautiful … a work of art … perfect.” I was lying on my side, unable to see some of the 110 staples that circumscribed an imposing heart-like pattern that ran like a miniature railroad track from my left butt cheek to my posterior thigh above my amputated stump, then returned to the point of origin. The nurses’ descriptions seemed at odds with the medical name of the procedure: “Excision left ischial ulcer, left biceps femoris musculocutaneous VY advancement flap with SPY angiography of left thigh.”

The artist, Dr. B, was well-known to the nurses as a stickler for details. “With Dr. B, everything must be done just so.” Another nurse with 30 years’ experience saw the purpose of Dr. B’s obsessive ways: “At first I was put off by his anal-retentive instructions,” she said, “but after seeing the results over the years, I’ve grown to appreciate him. He knows what works best, what will bring the best outcome. It makes everything go smoothly.”

Not quite everything. A few days following surgery, a CNA discovered a bruised, swollen area that encircled my lower right “good leg.” A powered compression sleeve that squeezed intermittently to avoid blood clots had been left on the leg too long following surgery, resulting in skin damage that could degenerate into another large pressure ulcer.

I called the head nurse in to look at the damaged skin.

“You see that!? I came in wearing a Tubigrip sock with mild compression and they removed it and put this automatic sleeve on for the surgery and it has all but squeezed the life out of my leg. I am not happy!”

“I’m so sorry. I don’t know how this happened.”

The look of alarm on her face was my cue to ease off. It wasn’t her fault, and this kind of oversight is all too common. “It happens all the time with paras and quads who have no sensation,” I told her. “Nurses and doctors get so fixated on the immediate problem that they neglect the rest of your body. People with paralysis and complications need whole body care. No one laid eyes on that leg in the last three days, and if something goes wrong, I can’t feel it. I’ve had this kind of thing happen before.”

For the reminder of my 18-day stay in the Clinitron sand bed, the multicultural nursing staff was diligent about checking my skin, catheter care, daily bed baths, emptying my urine bag and surgical drains, ostomy care, thrice daily meds, IV antibiotics, meals, everything. My discolored swollen leg gradually returned to normal. After that initial glitch, a procession of nurses from not only the United States but also Cuba, Nigeria, Vietnam and Mexico took care of me like we were members of the same family.

And we are.

I learned that when I talked about my spinal cord injury and my life, the nurses listened and I became more than a patient in a bed to them; and when I showed interest in their lives, I began to appreciate them as more than caregivers at the end of a call light.

“I Will go to Bat For You”

Hanging over the successes were repeated denials by my Medicare Advantage plan. For the flap surgery to succeed, I still needed a first-rate therapy bed to go home to upon being discharged — a bed I could count on to keep me free from subsequent wounds. My gluteal muscles were too wasted to support another flap surgery.

My experienced nurse-turned-insurance-case-manager guided my requests through several denials until my insurance provider had no choice but to make an exception and consider my case on an individual basis rather than by the book.

“I know this is hard to take,” she said, “but your chances of getting what you want go up every time you try a less efficient mattress and have a legitimate complaint.” It took all of three months, but after two inferior beds and three letters written by Dr. B (“I will go to bat for you, I promise”), my $20,000 Hill-Rom P500 wound therapy mattress was finally approved. My Medicare co-pay would be 20 percent.

Then I learned the $15,000 bed frame that was critical to the mattress working properly had been denied, meaning I would have to pay for that out of pocket. How could this happen? A wound therapy mattress without its frame? Can you buy a new car without its chassis?

One more week of lobbying, and the insurance company finally gave in. By this time, getting me out of the hospital might actually save them money. Then came another good news/bad news scenario: I was ready to be discharged, but the mattress and bed frame would take another seven to 10 business days to ship to my home.

“Why so long?” I asked the Hill-Rom representative on the phone. “How long does it take to drive a truck from Indiana to Oregon?”

“It’s company policy. I can’t change it,” he said. “But if you want it expedited, you can pay $5,000 out of pocket and we’ll try to get it there within three business days, but no guarantees.”

Five thousand bucks for expedited shipping! After three months of haggling, I was worn down, my policy had no choice but to cover the hospital tab for the extra week, and I would sooner shovel shit in a cow barn for a year than fork out $5,000 for an empty promise.

While incarcerated and waiting for time to pass, I learned that Stephen Hawking had died. A news story recalled a famous quote of his about black holes: “They are not the eternal prisons they were once thought,” he said. “Things can get out of a black hole, both to the outside, and possibly, to another universe. So, if you feel you are in a black hole, don’t give up. There’s a way out.”

Only a theoretical physicist-genius who happens to have been paralyzed to the eyeballs for more than 50 years could manufacture hope from a dying star beyond the reach of light.

This is the fourth installment in Journey to the Far Side of Tomorrow, a six-part blog series chronicling our editor Tim Gilmer’s unexpected immersion into the world of flap surgery and all it entails. Read the first installment here,  the second installment here, and the third installment here. Look for the fifth part in mid-April.