The Four Roads

When I was six years old, I prayed for one thing: to help end the pain of loss.

I didn’t know yet how big that prayer was, or how many times I’d try to answer it. I only knew I meant it. And I’ve spent every year since chasing it down one road after another — learning a new way to answer it each time the last way was taken from me.

The prayer had a reason. That same year, my grandfather died of a heart attack. He delivered heating oil for a living — dropped off the oil and the bill, and just died standing up. So the first road chose itself: cardiac surgery. If loss begins in the body — in the heart — then I’d learn to reach in and stop it there. Stop the very thing that took him.

Then came my first blood clot. At fifteen, the surgeons at CHOP went in, cleaned out the DVT, and found the defect hiding behind it — the anatomical reason my blood kept pooling and clotting in that leg. They didn’t want to put a stent in someone so young. And when it turned out my body burned through Coumadin too fast for the drug to work, they wouldn’t move me to Xarelto either.

Around then I started noticing my hands shake — that my fingers don’t always move the way I tell them to. You can’t hold a scalpel over an open chest with hands like that. So I let the first road go.

So I aimed at nursing instead. And I was good at it.

I started as a Supplemental Instructor for Anatomy and Physiology. That first semester, all I had was a one-hour window and a room I could only use if no other professor had claimed it first. It was enough. So many of my students passed that by the second semester they handed me my own key to my own lecture hall — the same room other professors’ students had started sneaking into, because word had gotten around that whatever I was doing worked. They’d sit through three hours of me nerding out on the material before a three-hour lab — and sometimes the first group would slip back into the second session of the night, just to catch a few last answers.

The reprimand came anyway — not for the results, but for not reporting the ones who snuck in. They could dirty the data, I was told. Skew the numbers that proved my method worked. I told her: I’m not here to win your funding argument. I’m here to help make nurses.

At nineteen, Phoenixville finally put me on Xarelto. My blood burns through Coumadin in hours — I metabolize it too fast for it to work — and Xarelto was the drug that finally did. Then, half a year later, I lost CHIP. This was before the ACA. No insurer would take me — “pre-existing condition” — and suddenly the medication keeping me alive was mine to pay for. So I worked three jobs at once — for rent, for tuition, for that drug — while carrying a full course load. I paid rent twice: once for the place I lived, and once for the drug that let me keep living. I burned out. I withdrew when I couldn’t cover tuition and books and supplies on top of all of it.

Then, for about ten years, I was okay. I left school and I worked, and I climbed — at Nestlé I became the TPM Tagging Process Guide, in line for the Line 13 Resource, the manager’s chair. A life, a routine, the clotting managed, the leg holding under me. Long enough to let myself believe the worst was behind me.

Underneath all of it, though, there was always a reason I clot. It had a name — the one CHOP found when I was fifteen: May-Thurner syndrome. An artery crosses over the main vein draining my left leg and presses it shut, like a foot on a hose. Blood gets down into the leg fine — it just gets stuck getting back out. So it backs up, a slow traffic jam building in the vein, and where blood pools and stalls, it clots. That’s where my DVTs come from. That’s why the leg started to get heavy.

In late 2017 — I was twenty-four — the leg got heavy and hard to move, and I went to LVHN. Three separate specialists agreed on the fix, and agreed that I qualified for it. A hematologist confirmed the May-Thurner outright. A vascular surgeon worked me up and referred me on for the intervention. And an MR venogram put it in black and white: the vein on my left side narrowed to the appearance of an occlusion, right where it passes between the artery and my spine, with my body already sprouting detour veins around the blockage. I didn’t just meet the criteria — I met both halves of it at once: the compression, with all of its findings, and the DVTs.

The fix was a stent — a rigid mesh scaffold set inside the crushed vein to hold it open, the way you timber and steel a mineshaft so it can’t collapse and cave in on itself. Prop the vein back open and the traffic clears; the blood moves again. The stent itself was a two-to-four-thousand-dollar part; the surgery to place it, an estimated fifty-five thousand. Placed then, before the backup turned into wounds — the timing wasn’t incidental, it was the entire point. At that stage a stent holds the overwhelming majority of the time. Let chronic wounds set in first, and the odds fall off a cliff.

UHC said no.

And here is the part that still stops my breath: their own list of what had to be true before they would cover the stent included non-healing wounds. They required me to develop the exact catastrophe the stent existed to prevent. They didn’t just deny a procedure — they denied me the stage I was still standing in, forcing me over the prognosis cliff, and waited for me to fall. By the time my disease had progressed far enough to satisfy their criteria, it was too late for the stent to save the leg. They orchestrated the exact fail condition.

And they made me pay to prove it. The workup straddled the end of 2017 into 2018, so I hit two out-of-pocket maximums — two full years of my own money — for the tests that documented, beyond any dispute, that I needed the surgery. I paid in full to prove my own case. They denied it anyway.

Then the wounds came, right on schedule. Livedoid vasculopathy — the small vessels in the skin clotting shut too, so the tissue stops getting oxygen and nutrients, suffocates, starves, and breaks open into wounds that won’t heal, because nothing living is reaching them anymore. The stent was meant to keep the blood moving before it ever came to this. They made me come to this on purpose.

When the non-healing wounds finally disabled me, I couldn’t stand doing nothing all day. So I re-enrolled — student loans this time — at Kutztown, in Public Administration. I figured I’d navigated disability well enough on my own; I’d learn to help others do the same, and to recognize when someone was past the line and drowning. I knew that line. I was months over it myself — past the blue-book “disabled by wounds” threshold.

Apligraf was eventually allowed, and it ended seventeen months of non-healing wounds. Then the wounds came back, and they demanded the step therapy all over again — eleven more months before Apligraf was cleared a second time. But the wound became infected, and under limb salvage they moved me into hyperbaric oxygen therapy. That made attending class impossible: I had to lie in a hospital gown inside a glass coffin of pressurized oxygen — three hours a day in the tube, plus about an hour of travel and the prep of the chamber. I had to withdraw again. I couldn’t take books or a device in with me; the smallest spark would turn that chamber into an immolation tube.

And the chamber wouldn’t have saved it anyway. The damage was internal now — structural, load-bearing. I was going to lose the leg, and I wouldn’t have been able to walk a campus on it regardless.

And still I couldn’t sit in the nothing. I enrolled fully online, at Full Sail. I’d seen omnidirectional treadmills, and I wanted to learn to code — to build a gamified VR physical-therapy setup: the rehab tech I needed myself. Then came the denial for the tertiary prosthetic. Then the falls. Then I needed an amputation revision. I asked to put my classes on pause. They said I couldn’t. So I withdrew — and walked away from a 4.0.

The thing is, the denial made no sense. Less than twelve hours after the amputation, I was walking with a walker. I was discharged after two days instead of the usual five to twenty-one. I skipped inpatient rehab — a major expense — because I could already move around. Within a month, my AMPnoPRO score was marked at K3, which meant I had earned and qualified for the microprocessor knee on the tertiary. After the denial, we weren’t even supposed to need a retest — but my doctor retested me anyway, at K4.

United Healthcare pretended the PT note didn’t exist and misrepresented my qualifications. That is fraud, and a failure to uphold their Medicare contract. For them, it is business as usual — and exposing it is the whole point.

That one still stings. Because it was taken. My recovery was sabotaged by a fraudulent denial — the same kind United Healthcare is perpetrating on all of America, according to the AMA and KFF.

Here is the part the machine never counted on. Once the leg was gone — the one they forced me to lose — the weight it had been dragging on the rest of me went with it. Right after the amputation, I felt the best I had since I was fifteen.

Then the denial for the permanent prosthetic sabotaged it, and I went back down — falls, exertion headaches, months of clawing the ground back an inch at a time. I built myself up anyway. Then a saddle pulmonary embolism knocked me flat one more time. That one I won’t lay at UHC’s feet — some setbacks are just the body, and it isn’t worth tripping over a but-for I don’t need.

It has felt like digging myself out of a ditch while someone stands at the rim making the hole deeper. My blood still runs too fast for any one thinner to be the last word — Coumadin, then Xarelto, now Pradaxa, and we’ve found what holds. Some days my lungs only keep up when I’m sitting: I can put my body in the grass and dig a hole big enough to plant a fruit tree, even on a day I can’t cross a room on my feet.

They took the leg. They did not take me. And I am rebuilding — again.