Toad in the Hole

About that outrageous statement I posted last: Yes, literally and unqualifiedly true. How does somebody end up in such a situation?

Jeanne had a liver disease, misdiagnosed—well, actually more like badly transcribed on her medical records—way back when. On the records, it went mysteriously from “possible hepatitis B” to “hepatitis B.” The transplant team at Jackson Memorial in Miami told us, after having been told repeatedly about the misidentification, “We tested. She doesn’t have hep B!” Yeah, no shit.

Ultimately, that probably didn’t matter much.

As a result, though, she had a clotting disorder. She had to have platelets before getting even dental work done.

The clotting disorder meant that when she had cancer sometime around 1995-96, she couldn’t have surgery. The cancer was treated with radiation and, as we know from the extensive pre-transplant testing that went on at Jackson, didn’t recur. The radiation damaged the nerves in her bladder—not unusual, but she had no medical coverage, and so kept her doctor visits to a minimum over those ten years. No one she visited, evidently, told her to watch out for the symptoms of those nerves’ gradual failure, and she went undiagnosed with that until her kidneys were damaged. However, when it was diagnosed last fall and she started self-catheterizing regularly, her kidneys recovered very well.

What put her in the hospital the last time was a bladder infection, which also isn’t unusual in self-cathing patients. She was not getting prophylactic antibiotics, as is common practice, nor was she getting tested regularly for infections. In fact, when she was dfischarged from the hospital last fall, they sent her home with a bag od catheters and no instructions except what came with those. She had a follow-up appointment with a GYN doc the next morning (about cancer screening—she was clear) and that office’s nurse took action to get her some decent instruction.

The history of cancer, however, and I suppose the clotting disorder, meant she was turned down time after time for medical insurance under the “pre-existing condition” catch. Her partner Tommy is a self-employed building contractor. He could get insurenace for himself, but not for Jeanne. There’s a fat stack of turndown letters about this in her records.

Because she lived with Tommy—she certainly couldn’t afford to live alone, though she was productive as anyone could be, and I’ll go into the particulars later—his income meant she didn’t qualify for Medicaid, though she and they kept trying to get it. That was the glitch that kept her in the Orlando hospital when she’d been approved for a “legit” transfer via Life Flight helicopter to Jackson Memorial for a liver transplant.

As Jeanne got sicker and sicker in the Orlando hospital, Tommy’s sisters and brother (the Pitbull Squad from Jersey) besieged the offices of the local state and federal representatives and Social Security to get the paperwork finished. The hospital financial office stopped the transfer on a Thursday; Jeanne got worse the next day, and the Orlando doctors stopped saying they could stabilize her until the paperwork went through.

It was a weekend, and offices were closed.

Saturday Jeanne got worse still, and the Orlando docs started saying they’d done all they could for her. They stopped giving her blood products—packed red cells, platelets, and fresh frozen plasma—and started doing what smelled to me like terminal palliative care: things like Haldol, a big sedative. Blood products for her were hard to come by, as she needed more and more-closely matched typing because she’d had enough transfusions that she was developing antibodies to more and more types.

Sunday, Tommy arranged to rent an ambulance and take her out of the Orlando ICU against medical advice, to the emergency room at Jackson Memorial. At least the medical staff would get a crack at her while the damned paperwork got massaged. An incredible amount of winking, implication, and backstage encouragement from various officially unofficial people went on all day as the staff prepared Jeanne for the transfer. Yeah, you bet it was risky, but not doing anything was riskier as she declined and they ran out of options. She was pretty much unconscious all day, but was clearly in pain and having leg cramps (she’d had them for years) that would gradually drag her down to the end of the bed so we’d have to drag her up again every hour or so.

When I say “declined” I mean this: she was bleeding from her bladder, her nose and gums, her eyes, who knows where else. She still had the infection that had brought her in, and was periodically fevered. Her blood pressure was wildly unstable, dropping with every new internal bleed and stabilizing briefly after she got platelets. She was badly jaundiced, yellow all over except for the whites of her eyes, which were instead deep blood-red. (You can imagine the effect, as she had light blue irises.) She went from delirious (excess ammonia levels in her blood, among other things) to unconscious periodically. She could barely move, even when she was conscious enough to try. Her kidneys were declining in function, so she was bloated too, especially her abdomen. Her head hurt when she was conscious, and we had to hold or restrain her hands so she wouldn’t scratch her itching nose and start more bleeding.

I rode to Miami with her and the two-man crew on Sunday night—they made me stay in the front of the ambulance, but I spoke to her periodically so at least she’d hear a familiar voice if she could hear.

Did we do the right thing? You bet. It resulted in a torturous four days in that huge and nasty ER, but mysteriously enough that hospital had no trouble getting her blood products immediately and they changed her meds, and she began to rally by the next day. She opened her eyes and recognized us. She gradually began speaking intelligibly. She sat up, with help. She said many naughty words. This was entirely appropriate, as well as in character.

Tuesday morning, still in the ER, she handed our sister Julie a handmade improvised birthday card. (Yes, that was Julie’s birthday.)

As you might imagine, we were all delirious ourselves, with elation, relief, joy. It was by no means final and we knew it, but it was the first and best cause for hope we’d had in weeks.

That was part of my first trip there, early in February. More later when I can make some narrative sense of it. But please note that Jeanne would have been in the hands of the Miami transpalnt team at least a week earlier if the paperwork had gone through on time, and that she and the family had not waited for the crisis to try to get it all arranged.