Showing posts with label vancomycin. Show all posts
Showing posts with label vancomycin. Show all posts

Thursday, August 28, 2014

Obéissance: Protect the 'nads

The reason for this repost?  Franchement? The cartoon.  Because that's pretty much how I'm feeling these days.  For non-French speakers, it goes something like this:
"You can do anything you like...
So long as it's what I want you to do."

I particularly dislike having to display "obéissance" when it concerns my body, because that means it upsets Fred's status quo and his upset status quo can be Hell to live with.  It takes a lot of his time and most of his dwindling reserves of patience to ferry me back-and-forth to the doctor, sit in ER/ED waiting rooms, field frantic phone calls about forgotten rechargers for phones and other electronic devices.  [Don't tell me to go wifi unless you're willing to finance the endeavor.]  

I'm supposed to email by very nice HMO doctor tomorrow to report on the status of my infected foot. [Because no one, apparently, gives a good goddamn about my right hand turning into a swollen claw!] What to say, when facing a 3-day weekend and people more interested in getting to the various Folke Faires around Tête de Hergé than interested in butt-ugly hands and feet?  Truth be told (and that reserved just for you, Dear Readers!), the foot is bright red and the infection returning to its original volcano-like presentation (Is that good? Bad? Will it burst open and solve its own problem?)  Further truthes?  My right hand is swelling, hurting, and fast becoming useless.  Despite the difficulties in assessing temperature in a CRPS patient, to me, the offending middle knuckle, which began this hand boogerishousness is quite warm.

So "obéissance" is again in question.  Could this foot-and-hand disease be put off until next Tuesday, when the Force of the Medicos will again be at full power? Or should I submit to the standing offer to go back in the hearsepital for i.v. vancomycin, and a possible PICC line.  Let me elaborate on what may seem, to you, an easy choice.  Once the definitive switch back to vanco, it means Fred will make at least 4 trips a week to an infusion center, and probably for at least a month.  This at a time when we are sick to death of things dealing with sickness.  

There. That makes my rationale for posting this past pithiness from May 2009 clear as MUD!  You're welcome.  And it's your forebearance, Dearest of Dear Readers, that endears you so to me.  I think there will be another brief hiatus in posting... The Truth will out, after all -- because it is Truth which ought to drive all expressions of Obéissance.

*********************************************




A mélange, a mix.

That's all I am good for at the moment. But, as most of us are, I am open to suggestions.

It looks like Uncle Kitty Big Balls is going to be a cool member of The Family. A very poised little dude, ugly as sin with his fur shaved off, he saunters his maigre self around The Manor every few hours, shaking what little butt he has much in the manner of The Marmy Marmot. When the two of them vocalize, it's a hoot. She goes: "Ack-ack-ack!" He mumbles back: "Ark-ark-ark!" You'd think they were inveterate cigar smokers. Which, of coursed, is just impossible.

What's wrong with you?

It's a national day of prayer, privately. Some of my friends think there is an "issue" to visit in this; I do not. Unless it is an extremely slow news day -- something that the U.S. citizenry might well enjoy for a change.

ShoulderMan's PA, Bountiful Bob, was, as always, very kind yesterday. {I, feel, very, attracted, to, the, comma.} One of their techs alternates between freaking me out and being a regular intrigue. So it was highly uncharacteristic for him to greet me by saying, "Are you all right? You gave us quite a scare last week..." He kept saying it, bless his bones, reminding me that being near death is the easy job -- Attending to the situation should not be envied. On the other hand? The x-ray tech was unhappy with me when I refused to assume the position for one of the shoulder views, and therefore created something ex nihilo -- and five shots later, she still had not succeeded in her approximations. I had dollar signs flying by my eyes. Bob stood with furrowed brow and dark, unreadable films tucked in the lightbox. I pondered the probable extra heft of my bill and inwardly rejoiced at having my stitches out, the promise of a shower in my future, as soon as I can manoeuver my dainty dancing feet and sufficiently SaranWrap my PICC line. We've never been able to keep the line dry -- it is put in the non-operated arm, of course, meaning that it is in the only usable arm and is therefore subject to being hit with water.

Fascinating.

Okay, so I was browsing TW's blogs, and over on X, he posted this hilarious and touching family moment:





During the night, I was doing one of my favorite memory exercises: visualizing every house I have ever lived in, every school I ever attended. The various digressions that peel off these onions are wonderful, and exacting. This time, I ended up stuck in an elementary school in California, where I was the Undisputed Tether Ball Champion of the World. Second grade.

I remember the Second Grade primarily for two reasons -- beyond my sporting prowess:
1. I was punished for reading, and,
2. Our teacher kept sending us home with bags of guppies, which eventually pushed my stepmother over the edge of reason.

The reading punishment? We had finished some sort of in-class writing assignment, probably working on our "cursive," as I recall this teacher was a maniac for crap like the loops of one's els. When finished early, we were supposed to put our heads down on the desk on top of our folded arms. Well, yawn, y'know? So I had stashed a book -- and not just *any* book, but Harriet the Spy -- inside my desk. With my head down in obéissance+, I began a new chapter. Next thing I knew, this stellar educator was whacking my palm with a ruler. I don't recall if there ensued any sort of [parental] conference, or sustained punishment -- all I know is that I felt loved by my stepmother, herself a teacher, and that she defended me.

No, not so much like a lioness, more like a proper stepmother. You know? The roles felt well-defined, and that's a pretty rare thing in blended families.

Defended for reading. Punished for reading. Whacky.

A day later, my sentiment, like the worm, turned. At supper -- spaghetti and meatballs -- I swallowed a huge ice cube, and it went down the wrong way. I was choking. Unable to speak. She laughed at me. Then she laughed at my anger at being laughed at. One of those Mother::Daughter special moments. Like the day I first plucked my eyebrows -- at 13, I think -- and she, sipping on her drinkie-poo, reacted by saying, "Oh no! Your one good feature -- gone!"

She had this habit of coyly dipping her pinky-finger into her drinks, and sucking on it, making eyes.

+Obéissance: L'obéissance ou soumission à l'autorité est l'une des formes de l'influence sociale. En psychologie sociale, on parle d'obéissance quand une personne adopte un comportement différent parce qu'un autre individu, perçu comme une source d'autorité, le lui demande. L' individu dominé reconnait à une personne, ou à un gouvernement une valeur certaine. Lorsque cette reconnaissance est faite, l'individu passe alors un accord tacite, un consentement avec le supérieur qu'il a reconnu; Il échange sa liberté contre la volonté générale d'être assuré et sécurisé.

Les recherches les plus connues sur l'obéissance sont dues au psychologue américain Stanley Milgram. Dans son expérience de soumission à l'autorité, il amène des gens normaux à infliger des chocs électriques de plus en plus forts à un autre sujet (en fait un compère, c'est-à-dire un expérimentateur qui prétend être un sujet de l'expérience) qui supplie d'arrêter l'expérience puis crie et se tait, comme s'il était victime d'un malaise. Certains en prennent comptes mais d'autre ne la respecte pas car ce n'est pas une obligation.

A la suite de Milgram, l'expérience de Charles K. Hofling a montré que 21 infirmières expérimentées sur 22 était près à donner une surdose d'un médicament inconnu sur ordre d'un médecin inconnu au téléphone.

This schtuff is fascinating, no? Imagine. In Hofling's experiment, 21 of 22 nurses ready to give an overdose of a med unknown to them --"Astrofen" -- by order of a doctor, who was also unknown to them -- an order taken over the phone, no less! That was in 1966... Rank, in 1976, changed some of the parameters of the study [30 mg of Valium, IM -- and subjects were allowed to interact with colleagues] and stood the results on end: 16 of 18 nurses questioned the orders.

Shocking...













Obedience. Consent. Informed consent. Authority.

Our secret desires.

Obéissance:

A manifestation of obedience; an expression of difference or respect; homage; a bow; a courtesy.

Bathsheba bowed and did obeisance unto the king. --1 Kings i. 16.


I am not able to sleep more than two hours a night from pain that is amazingly straightforward. I have been encouraged to let so-and-so know, as if so-and-so were able to alter reality with a prescription pad.

Anyway, this lack of rest fuels the penchant for mélange.

The cultural anthropology of this cat group that teems around my swollen ankles would fascinate anyone. The wonders of family dynamics, the unexpected likenesses, and the quirky divergence --

Marmy is smug and happy to have her brother ark-ark-ing from beneath our bed; Dobby's brain is clearly spinning as he tries to figure the point of origin for his oddly familiar uncle; and Sammy is hissing and tucking his tail to protect the 'nads.

That's probably what I would be doing, too, were I he.

If I have learned nothing else of value in this life, it is that: For God's sake, protect the 'nads.

Wednesday, June 20, 2012

in lieu of originality....

in lieu of a post dedicated to marlinspike hall and manor fans alone, please allow me to copy the high wit and zaniness that i sent out to my friends and family list last night and this morning.

i must highlight a scientific discovery, however:  dark chocolate seems to be the cure for most illness.  dark, dark chocolate -- low sugar.  sensuous.  you heard it here first.

okay, here are my cut and paste offerings:

#1.  To MDVIP  Go-To-Guy and his hopping nurse, Jalapeño:



HI -- 


I just called yesterday to say that I was going home from X Hospital.  Dr. D felt good about the surgery, did not see obvious infection, removed the spacer, etc. so I am shoulderless on the left.   Dr.B did not feel so optimistic -- seems more worried about the situation in the bone and less about the joint space, and ordered another bleeping PICC line and a month to 6 weeks of intravenous antibiotics.-- daptomycin.


He said I need either vancomycin or daptomycin -- vanco messes up my ears, and I get high liver enzymes on daptomycin, but those are my only choices [?].


I am exhausted and depressed and hurt.... BUT if we had not been able to stop the CRPS spasms beforehand?  This would have been a disaster -- so I THANK YOU FROM THE BOTTOM OF MY HEART for helping to get those stopped.


We have to make numerous trips back and forth to Dr. B's office and Fred is unhappy.  Five minutes before we left the Manor Monday to check in for surgery, he told me he was not going to stay with me after surgery, and "so what should I do with your stuff?" [like a *wheelchair*]  I made him leave once he dropped me off, because all I was getting was more ADHD/PTSD stuff and I couldn't take it anymore.  So I went into surgery sobbing like a nincompoop and he didn't show up until 4 on Tuesday, just in time to leave the hospital... I don't believe he remembers doing or saying any of that stuff on Monday.  It's amazing, infuriating, depressing, scary, and it makes me very lonely sometimes.  But love is miraculous, and on the way home he stopped of his own accord to get me some chocolate.  Sometimes buying your partner chocolate is the biggest "I love you" you are gonna get.


This time, though, even if he has to lose it for a little while, I am okay, I am not febrile and falling down!  It's time to take care of Fred for a bit.  And ManorFest is now just weeks away.  We are thinking of submitting the film of this surgery to the Sundance Festival Competition, Cannes, and have a preliminary showing here, shown on the outside wall of the Labyrinth -- which is now big enough to serve as an IMAX screen.


Okay, well, let me get busy trying to see what life without a shoulder is like!  So far, I haven't even had the guts to look at the wound but Dr. D seemed very pleased.


You all are wonderful.  There is no need for home nursing or any of that -- Fred, Bianca, or I (probably me) will do the PICC infusions -- they are just once a day.  If I can get the long extensions put on the PICC do-dads, then I can use my left hand for flushing the lines.  Fun, fun, fun!


Nathalie at G's switched me to 25 fentanyl patches.  Do you think she will believe me that we went through 3 of them in 3 days?  One fell off in the shower on Sunday, they pulled the next one off in pre-op, put a new one on that Hank pulled off, thinking it was tape,  We are a lot like the Marx Brothers.


Much love and appreciation for your prayers and good thoughts.  If I spike a temp or feel really rotten, I will call: you, D, B -- in that order!


Profderien, Gimp par excellence


PS My new least favorite experience?  Being given the paralytic medicine in the operating room before having access to any breathing tube... can you say "panic"?






#2 To Friends and Family, with a few foes thrown in for good measure:



howdy, group --


i am home, but now you can only cry on one shoulder.  you can only put your head on one shoulder... i can't think of any decent shoulder jokes!


there was a divergence of opinion -- the surgeon felt there was no "significant infection," and the infectious disease doctor was more concerned with the state of the bone, not the joint space.  in battles between infectious disease bigwigs and shoulder surgeon bigwigs, it's the "ID" guy who wins.


so they inserted another bleepety-bleep PICC line yesterday and started 6 weeks of daptomycin.  never mind that it gives me liver toxicity, ID Man says "we'll keep an eye on it and if it gets too bad, we'll switch to vancomycin."  vancomycin makes me have auditory hallucinations, and ringing in the ears which can be permanent.


if i did not like and trust ID Man so much, i'd have taken off at high speed in my trusty chair, clearing the way with a cane wielded with fierce precision.


okay, so it hurts like the dickens, i have not had the guts to look at the wound, and we have to be at ID Man's office in just a bit.  so this well-written, well-thought out missive must end.  don't cry...


fred is fine.  i about killed him, but he's fine.  i don't think he has any memory of the crap he pulled prior to surgery, which is just as well....


i love all of y'all, and have appreciated your support over the ten surgeries these past three years!


if you are not an obama supporter, and i suppose that is in the realm of possibility, please still give thanks to the man for giving me the opportunity to buy insurance when all the private companies refused to cover me any longer.  it is still a bankrupting situation, but i am covered and treated well.  i grieve for those who are not.  i am pretty sure that romney would not recognize me as either a corporation or a "person." 


love ya,
profderien, the one-shouldered gimplet









Monday, March 5, 2012

Just Sound, Just Noise

ARCHANGEL SAMAEL


While in ICU in February, I hallucinated pretty much nonstop, with a full soundtrack for the rich visual tapestry I wove, ostensibly to force a measure of sense into a nonsensical situation.  The problem actually began back in January, a few days after the first surgery in this series [of what I pray to be three!].

Initially, the issue was confined to my ears and my hearing;  There were no outside actors, no severe yellows or oranges, no vest-wearing flight attendants in lieu of breezy, unconcerned nurses.  Just sound, just noise.

The talented infectious disease folk determined then that Vancomycin was the culprit, given its reputation for ototoxicity.  Also, and I'd forgotten this, I'd had the same reaction before.

What is it like, auditory hallucination?  For me, the bizarre results stem from the meshing of tinnitus and distortion -- with the major push toward insanity coming from hyperacusis.  It translated into the sound of a Paul Revere copper-bottomed kettle in the early moments of its first, hesitant whistle.  It adopted the hushed wheeze of a pneumatic door, closing. [As a gimp in a wheelchair, I have intimate knowledge of AutomaticCautionDoors -- the name meant to be crowed without a breath, but with concupiscence, since I love AutomaticCautionDoors, and I wants me one.]

There was never any confusion about whether I heard things in the world [kettles and doors] or the utterances of people.  The weirdest detail of all this weirdness was that people never spoke with autonomy.  No, they echoed -- they echoed what I said or the verbiage spilling from the television.  When visible, they expressed themselves normally and I perceived them normally.

For example, nurse Juanda [a wonderful clinician, a delightful person] might stand at the foot of my bed, explaining the steps of giving a blood transfusion.  I see her as she is;  I hear what she says, and only what she says, except for the sonorous background of whish:whish and spiky-squeal:spiky-squeal.  The door to my room is closed, a state I try desperately to maintain, for it keeps out the subjects, and objects, too, of my auditory hyperacuity.

Juanda, unfortunately, is one of the worst when it comes to flying out the door and leaving it wide open, leaving my mouth in a Big-O of Oh-No, for now I am subject to the whims of noise in the hall and at the nursing station.

So, although now absent, Juanda's garbled talking to her colleagues mixes with whish:whish and spiky-squeal:spiky-squeal.  Alone in my room, sliding around in that ridiculous bed, I mutter, "Damn it, Juanda.  Why can't you manage to close my freaking door?"

And I promptly hear Juanda (sometimes also a chorus of cohorts) repeat, in singsong style, with laughter, "Damn it, Juanda.  Why can't you manage to close my freaking door?"

There was often another effect, one that is even more challenging to describe.  Maybe you will understand... a sound warp?  No?  How about the wah wah wah of Charlie Brown's teacher?  Better?  Okay, well, take that effect and imagine her wah wah wah as a small portion of my echo -- imagine "damn it, Juanda" in wah wah wah form, but really, really LOUD, and only on one side of your head.  It was confined to my right ear area... and I say "area" because, honest to God, it seemed to come mostly from my jaw.

[Why not be honest?  I sound like a total nut already!]

While it was reassuring to be told that I'd not descended into some snake pit of mental illness, I was scared by the warning that these changes might be permanent.  I became an instant introvert, sucking a bit on my lower lip, and humming.  The cure for Eerie Echos was to simply say nothing, a cure wholeheartedly supported by a weary Fred, who looked on the verge of collapse, and whose body visibly jerked whenever I barked, "Did you hear that?"

They switched antibiotics and the weirdness disappeared.

The experience in February? You, Dear Readers, will be the first to hear about it -- although I did offer a sanitized version to a couple of people.  As caretakers, doctors, and nurses have regaled me with stories of "how [I] almost died," I've been able to piece together the "real" events behind what I hallucinated, with the resultant conviction that reality does not matter.

Here's what happened [and you may debate "happened" within the familiar decor of your own brain]:

There were four angels trying to save my life.  Heavy blocks of concrete, each block bound with orange plastic ties, were attached to my arms and legs.  I was caught in a mesh of girders, spikes, construction-themed stuff, and by caught, I mean, impaled, conjoined, pierced, smushed.

There was, however, no pain.

After a day or so of struggle, the five of us concluded there was no good outcome available, that I would have to die.  It was imperative, however, that my body be set free of the blocks, the shards, the spikes, the nails and bolts and beams.

The four angels said I must be flailed, alive.  The four angels said that I must then be deboned, alive.  [Yes, I am aware of the easy resonances of these torturous words with the state of my health, with my orthopedic prospects, even -- I am warned about the possible outcome of a flail arm, for instance.]

They handled the flailing.
But I was in charge of my own deboning, my own disarticulation.

There was music, lovely music, and interludes during which we all slept.  They kept me comfortable, floating in the air, in fact, by the soft, soaring music that originated in those angel minds.

"Why do you insist on speaking?  Talk to us as we talk to you."

Every now and then, filtered through my hallucination, came the words of the doctors and nurses trying to help me:  "What are you doing?  What are you trying to do?"  Mostly I heard them during the many frazzled, failed attempts to remove the heavy weights from my arms and legs, to understand how they were strapped to me, so that, through some blueprint or other, I could unstrap them.  And throw them.  I remember wanting to throw them.

There was some incidental, ridiculous drama, involving a radioactive blast.  You know, the usual.

The thing was... I wouldn't die.  The four angels were distraught.  I must also have been pretty depleted, psychically, because the story devolved in stark fashion at this point.  That's right, there were firearms and my head was the designated target.

Wusses, the angels.  They said their goodbyes (promising me sight of the Face of God as a reward for the chutzpah displayed in all that flailing and dissection), passed the gun back and forth, talked a good bit about some soap opera, and then concluded that they couldn't do it.

Yes, the hallucination must have been breaking down at that point, because, in addition to hearing the woes of soap opera characters, I had this reported conversation with one of the "intensivists":

Intensivist:  Why are you waving your hand?
Me:  I'm trying to help.
Intensivist:  Help who?  Do what?
Me:  Help them.  Help them shoot me in the head.

My logic was impeccable.  The angels were seated, of course, out in the hall, in shabby collapsible chairs, looking for all the world like almost drunk fishermen in the muddy low water of a local lake.  Maybe the sun was in their eyes.  Maybe they were tired -- some of them had had to leave during the night to tend to other near calamities -- and their vision, as a result, was not so sharp.  So I put my hand behind my head and wiggled my fingers with joy and abandon, hoping that would relieve the angst of having to aim.  Just blow away the jittery appendage dancing behind my curly hair, and all would be well.

The next thing I knew, my eyes opened, and an intensive care cubicle emerged, neat as a pin, full of beeps and alarms, cream colors, and green, with a window looking out on a brick wall.

I said, out loud:  "I got to meet the angels, die, and live, too?  Wow."

I remained crazy for a few more hours, but it was a fun crazy.  One of the cooler angels had promised, should the Face of God thing not work out, some quiet and a pickleback.  That's right, a shot of Jameson's chased by a fine pickle juice, all wrapped up in a plush silence.

whish:whish
spiky-squeal:spiky-squeal

whish:whish
spiky-squeal:spiky-squeal

The various theories?  I had a raging infection -- a large pocket of infectious goo had gone undetected during January's surgery -- a high fever, dehydration, out of control CRPS, jerkjerkspasmspasm, all served up by two falls on the cold, hard bathroom floor.

My favorite part of the fairy tale?  Because the hospitalist could not be bothered with the list of meds in records dating from all of two weeks prior, because she didn't decipher the careful etching on my MedAlert necklace (particularly the notation of adrenal insufficiency), because no one consulted the medication list in my wallet (nor the CD-ROM of my medical history, one of the benefits of frequenting MDVIP), I went without stress dose corticosteroids, methadone, Cymbalta, and other pharmaceuticals whose abrupt withdrawal cause... hallucination.  Among other things.

I've spared you, and myself, Dear Reader, with this abridged account of the goings-on.  There was nary a mention of how I emerged from those flailing and deboning sessions convinced that I had but one eye, and no nose.  That my surgeon had shortened my feet.

When they transferred me to a regular room, I was convinced that we were rolling through scenes from a Cirque du Soleil performance.  Oil paintings of hospital founders and benefactors winked and nodded as we passed.  Workers clad in pink and blue scrubs did quick little dance steps, dipping their chins and eyes in the demure pleasure of movement.

And when the glass of water and leftover iced tea from a missed lunch turned out to be only water and tea, not Jameson's, and not pickle juice, I was able to smile.

It comes off as sounding like profundity, implying great meaning, these stupid little stories.  People worry to hear the strange details, not understanding that clues from the environment played as much a starring role as the weirdness of my psyche.  The way I choose to see it, my brain's job is to make sense of things.  Increasingly, the means by which to do this are in short supply.

Friday, January 27, 2012

postoperative poopy-doops, and so on, and so, forth!

dear kind reader[s],

here's a [very] rough breakdown of Things Since Surgery, as composed earlier today [friday]:

one of the first things i heard while coming around was some news broadcaster calling newt gingrich "a nimble politician," so i knew i was either in hell or awake. 
here's a quick summary: 
the prosthesis was very infected, confirmed by frozen section during surgery
but whether it will grow in the lab is anyone's guess [if you have celestial influence, that's the wish to use it on]
he had to split the bone, unfortunately
he put in antibiotic laced spacer made of what's called "surgical cement"
i arrived in room from PACU with NO i.v. access and that was surely fun
on my birthday, i got a PICC line and a second regional block -- woo hoo!
the spasms arrived, along with dr. b, my favorite infectious disease doctor
dr. b, too, wants YOU to pray for The Crud to grow in the lab
spasms and pain brought me to my first ever declaration of 10/10 on the pain scale
needed 2 units of blood
they got permission, over my protests, to use my left forearm for the BP cuff
 during transfusion

i protested because that could cause CRPS spread in a freshly operated limb

and... the CRPS promptly spread
i was devastated
asked my ortho and dr. b to send me home so i could get pain control
they agreed
fred got to the hospital after the last drop o'blood, riding my wheelchair into the room like a knight in shining armor
we needed all kind of help to get my massively swollen and oh-so-fetching body folded into my wheelchair
[did i mention that the chair is on its last legs? that we were hoping the new one would arrive before surgery?]
fred had kept it nonstop on its charger
so, of course, we turned on the power, and... NOTHING... DEAD... KAPUT...
we got home but it was not pretty, nor comfortable
fred has been challenged and we are just trying to survive
we had to be at dr. b's place the next morning at 10
we made it... got re-trained in PICC line administration of vancomycin
by the time we got home, nerves and tempers were shot
but it's been uphill since then
fred forwarded all your email replies earlier today
and he was so wise to do that - as it gave me a wonderful lift.
he thanks you
i thank you
i love you!