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Jay Lake
Date: 2010-04-24 12:35
Subject: [personal|cancer] Medical updates from several quarters
Security: Public
Tags:calendula, cancer, child, family, health, healthcare, personal, shellyrae
After much further fire drilling and sheer confusion, tillyjane successfully underwent the required medical procedures yesterday. She is going home today in the strong hopes that her symptoms will be alleviated.

At this point, I wouldn't send a dog to Kaiser Sunnyside for cardiac care, or anything else, really. Even their patient relations people were pretty hopeless. The fact is my mom did get the care she needed, but the dreadfully bad medical communications policies, rank unprofessionalism of the hospitalists, and the financial impacts of their poor decisionmaking (which will cost my fixed-income mother an additional $800 out of pocket) add up to a piss poor healthcare experience. The actual medical care, when they could find their arses with both hands, was fine. But the wrapper around it was somewhere between Keystone Kops and nigh-criminal neglect.

Meanwhile, Mother of the Child's misadventures due to an OHSU procedural error have racked up about $30,000 in bills, of which about $2,000 is flowing to me as patient responsibility. Discussions will be underway shortly with their business, and doubtless legal, team.

I am in day two of infusion session eight, and so far am much less miserable than the past few sessions. Knock on wood. More to come as time and energy permits, but this going fairly smoothly thus far. As I write, I have about 26 more hours on the pump.

We are trying for the third time to have a family celebration of tillyjane's birthday tomorrow evening. If everyone can stay out of the hospital for a day or two, and chemo doesn't wreck me too badly, calendula_witch and I will attend, likely with the_child in tow. In other good news, shelly_rae is going to come down for a day or two next weekend, which means she'll see the_child's turn as a Maypole Dancer on 5/1, at the Waldorf School's Mayfaire.

Me, laying low. calendula_witch is heading out now for erranding. I am mellowing. Y'all play nice.

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(no subject) - (Anonymous)
User: joycemocha
Date: 2010-04-24 20:53 (UTC)
Subject: (no subject)
I have generally been happy with the care I've gotten through Kaiser (and I've spent a lot of time at Kaiser Sunnyside, including childbirth there) but when there's Kaiser fail, it's failed pretty annoyingly. I've heard that SoCal is a nightmare but still better than non-Kaiser.

My non-Kaiser experiences in the Portland area have been majorly poor, which is one reason we stick with it. They've been stellar with the Boy and his Crohn's, but I've not been wildly impressed with their ER stuff over the years. OTOH, I've not been wildly impressed by anyone's ER except for Sacred Heart in Eugene, and the local hospital in Florence. And Kaiser is where I had the knock-down, drag-out argument with the surgeon about whether my DH was too old to benefit from shoulder surgery after he broke his shoulder--to wit--me

"He got that injury skiing. Does that sound like someone who doesn't need a full range of motion to you? He uses chainsaws. I want him to be safe, and that means I want surgery. He's not that old."

Surgeon: "Okay, he's an active 54 year old."

Me: "Right. And he plays with chainsaws. It's an issue of safety."

And we did operate. Perhaps the repetition of "chainsaws" did it.

For that matter, it took a primary care physician's intervention to get the knee surgery a colleague needed after she tore up her meniscus in a household fall. Again, they weren't going to operate based on age, until her PCP called up the surgeon and had a meltdown until the surgeon agreed to operate.

Kaiser? No. Adventist/Providence.

No matter what the system, you need vocal and forceful medical advocates, especially once you're past the age of fifty. I remember my father going through the same BS down in Eugene, and we probably should have complained/sued over some of the stuff that preceded my mother's cancer diagnosis. Her former doctor (not her PCP at the time of diagnosis) screwed up royally, and I suspect that the arthritis medicine this guy had her on contributed to the stomach/liver cancer (her PCP at the time of diagnosis had yanked her off of that stuff quickly and put her on something else, but that was six months prior to diagnosis).
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User: auriaephiala
Date: 2010-04-25 01:10 (UTC)
Subject: (no subject)
So now 54 is the new 84?

I know people who are still doing manual labour (fine carpentry and bike messenger) for a living at that age and older -- and who would be screaming if they didn't get full care because they need full use of their bodies.

I'm not quite that age yet, but I'd be freaked out at the idea that over 50 I couldn't get proper rehab when I am still extremely active in my daily life.
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User: martianmooncrab
Date: 2010-04-24 20:25 (UTC)
Subject: (no subject)
You have the right to file a complaint with a complaint resource officer for the Oregon Medical Board.

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User: alumiere
Date: 2010-04-24 20:25 (UTC)
Subject: (no subject)
I'm glad that your mother got the care she needed in spite of what sounds like incompetence in the first level of care at the hospital. I've been playing catch-up all week, but I've been sending good thoughts and skipping through your entries to make sure things are OK for all of you.

Here's hoping the chemo continues to be less taxing, that tillyjane mends quickly, and that nothing else goes wrong, at least for a little while. Stress can be brutal when you're not sick; when you're already ill it can be devastating.
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Kari Sperring
User: la_marquise_de_
Date: 2010-04-24 21:19 (UTC)
Subject: (no subject)
It's good your mother has had the care she needed, but the rest of her experience.... Bah.
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User: e_bourne
Date: 2010-04-25 00:35 (UTC)
Subject: (no subject)
About the time of Mark's heart stuff, the husband of one of my admin had a major care accident. His care at Sunnyside was jaw-droppingly dreadful. Not so much the medical, the procedural around. From time to time they would try and operate on the wrong leg.

Kai has more reliable vet.

So glad to hear Tilly Jane is doing better and hopefully this nightmare portion of life is over.
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Gary Emenitove
User: garyomaha
Date: 2010-04-25 00:56 (UTC)
Subject: (no subject)
Not to make light of the situation, but you have to admit the typo in your first sentence is kinda funny.
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