Toad in the Hole

March 11, 2007

Some Background

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.

Posted at March 11, 2007 06:17 PM


Thanks for filling us in, Ron. I'm glad you can write about Jeanne, which doesn't make the circumstances of her death any less outrageous.

Posted by: Sally at March 11, 2007 08:45 PM

All I can think of to say are more naughty words.

Posted by: Sara at March 12, 2007 12:58 AM

ron, this is so horrifying. the immediate medical and emotional parts, obviously -- holy shit, how hard you all fought for jeanne, how hard she tried, the terrible facts of what happens when someone is so seriously ill. i am so glad that her team got the ambulance together, that you rode with her. it was the right thing, all of what you and your family and tommy's family did. jeanne had a very impressive and tight circle, and that had to have made things better for her.

the bigger-picture aspects of the story -- the health insurance business, and how big money moves mountains, and the spotty inadequate care provided to people trying hard but not having a half-million to spare -- we all should be scared. we don't have a workable health care system. someone who survives cancer -- victory! -- becomes uninsurable because of a pre-existing condition.... the health care priority isn't helping sick people; it is helping companies get richer by cutting their losses, watching the bottom line. that is one sick system.

(((( ron ))))))

Posted by: kathy a at March 12, 2007 07:35 PM

I followed links from Sara over here. I'm so sorry for your loss, and so enraged by your story. And very glad you're writing about the evils of our health care system.

Take care.

Posted by: Kay Olson at March 13, 2007 04:29 AM

I've been away from the computer for about a month (due to back problems) and was really sad to read your news. I'm very sorry.

I get irritated sometimes reading about the latest and greatest new pricy medical machines, when so many people don't have access to the medical treatments that are already available.

Posted by: Rurality at March 13, 2007 07:06 PM

I came over from Pandagon. Ron, I'm so sorry for you and your family's loss.

Posted by: mustelid at March 15, 2007 12:45 AM

There is absolutely no excuse for this. I am truly sorry for your loss and the loss of countless others who's stories we have not read or heard.

Posted by: Leashya at March 15, 2007 02:03 AM

A sad tale but...

How many doses of vitamin supplements or malaria medicine would this one transplant cover?

This is a typical American medicine story. Of course illness and death are bad, but too much money is spent prolonging life here rather than preventing sickness.

For myself, I decided long ago that when I get a terminal illness I'll cash in my life insurance, do myself in and give my estate to something useful besides contributing to big medicine (and encourage others to think likewise).

Posted by: C. Darwin at March 15, 2007 08:35 AM

i don't know how people can turn out so self-involved and flinty of heart that they go out of their way to tell a grieving stranger, "fuck you."

ron, i assume you can see my email address. you up for breakfast, lunch, coffee, a drink, or bowling or a walk or something one of these days?

i would love you anyway, but between raising 2 kids, seeing all my nephew went through with his brain cancer, seeing my dad die of metastatic skin cancer, caring for my elderly grandmother for years, etc., i have a huge fondness for nurses. huge. you have seen and done it all. when you are shocked by the callousness of a health care situation, that is saying something.

life and death and love and health is, in fact, much more than a cost-benefit analysis performed by someone else.

Posted by: kathy a at March 15, 2007 05:15 PM

I'm so sorry.

And sad to live in a society that measures *everything* with dollars.

Posted by: tigger at March 16, 2007 02:32 AM

Hi Ron,
I'm a member of the "Pit Bull Squad". I actually was quite flattered by the label. When it comes to family, I will bite, scratch, attack and do whatever is necessary to help. The whole process truly opened my eyes to health care in this country. We (the Pit Bull Squad) were so desparate to help, but we felt helpless.

I will be a donor for sure now. If anything good came from our Jeanne's death, it is that.
Take care.

Posted by: Peggy at March 22, 2007 12:17 AM

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