Toad in the Hole March 2007 Archives

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March 30, 2007

Faded Photograph

Ellie-sisters

Must be from 1980 or so? Jeanne's nearest the camera on the right; Joe's under the hat; they're taking the braids out of my hair; if anyone else wants to identify herself, why, step up to the comment box, babe. I know who you are; I'm just being discreet.

Posted at 04:40 AM | Comments (5)

March 21, 2007

Public Service Announcement

We interrupt this dirgeatribe for a piece of consumer info. Maybe it's even a feminist HUHO.

Costco's pharmacies (based on my admittedly limited sampling) rock, and they really do sell stuff cheaper while being a full-service pharmacy. Costco treats its employees decently, pays better than W@l*M@rt, and has repeatedly won my shallow consumer heart.

You don't have to be a Costco member to use the pharmacy. Apparently this is a matter of federal law, so it applies wherever there's a Costco pharmacy. You just tell the person at the warehouse door that you're going to the pharmacy, and you get directed there.

If you're in or near Harrisburg, Pennsylvania, tell them Julie's sister sent you.

Posted at 02:23 AM | Comments (5)

March 19, 2007

The Unglamorous Facts

Acknowledged as true, but there's no rubber bracelet for this aspect:

Money is a strong factor in who gets an organ.

Although organs cannot be sold or bought, money plays a role in how this country rations scarce transplant resources. Money does not determine who gets a transplant at a particular hospital, but it does determine who is referred for consideration and gains admission to a transplant center.

Access to transplantation is a function of access to good primary care and the right kind of insurance, which is heavily dependent on personal finances.

To gain access to the waiting list for organs, a patient must demonstrate the ability to pay transplant-associated costs. A kidney transplant costs $35,000 on average, a heart transplant $60-100,000 and a liver transplant $150-200,000 in the first post-operative year.
Many insurance companies and government programs do not cover the costs of some types of transplantations, particularly newer therapies such as lung, pancreas or multiple organ transplants.
Since transplantation depends on public altruism to make organs available, it is an especially untenable public policy to ask everyone to donate but to give organs only to those who can pay.

... Medicaid programs in some states do not pay for some types of transplants. The uninsured and underinsured are sometimes forced to resort to public begging to be considered as recipients.


Quoted from
Organ Procurement and Transplantation: Ethical and Practical Issues
Arthur Caplan, Ph.D., LDI Senior Fellow, Trustee Professor of Bioethics and Director, Center for Bioethics, University of Pennsylvania School of Medicine
Volume 2, Number 5; September 1995

Posted at 05:52 AM | Comments (7)

March 13, 2007

A Take-away Quote

During the first phase of the adventure in Miami, my sister Julie was explaining the whole mess -- insurance, Medicaid, the $338,000.00 letter -- to a friend who'd called to say Good Luck.

"Wait a minute," said the friend. "You mean that when I donate my organs, they go to whoever can afford them??"

Yeah, that's pretty much how it works. QED.

Posted at 04:32 PM | Comments (13)

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 06:17 PM | Comments (11)

March 09, 2007

We're Home

Saying Goodbye to my other sisters and brother and sister-in-law and brother-out-law and my nieces and nephew and niecephews-in-law and and grandnieces and grandnephew and the whole extended family was almost as hard as the rest of the week.

Almost.

Damn geography and plane fares anyway.

I'm going to tell the story here, in chaotic bits and pieces over the next few weeks. I will drop one salient fact into the stew right now: I saw with my own sore eyes a letter from the hospital in Miami telling my sister that if she would deposit $338,000.00 in a trust(?) account and $174,000.00(?) in a second savings account "for contingencies" she would be on the transplant list, given physical qualifications, immediately. Question marks in parens indicate that I have a less than perfect memory of the account type and the precise second sum -- it was well above $100,000.00 but below $200,000.00.

If the lot of us had been able to raise about $500,000.00 three or four weeks ago, my sister would be alive. I'll add the rest of the facts later, but that one's as firm as a fact can be.

Posted at 05:35 PM | Comments (4)

March 07, 2007

My Sister Jeanne

Here's the obit Joe wrote for the Orlando and Harrisburg papers.

Posted at 12:38 PM | Comments (3)

March 05, 2007

We Lost

My sister died Friday afternoon when we had life support withdrawn.

I'll write more when I get home. This sucks more than anything else in my life, ever.

Posted at 03:58 AM | Comments (16)