Showing posts with label MRSA. Show all posts
Showing posts with label MRSA. Show all posts

Thursday, November 3, 2011

Feckless Fabiform Fistula, Batman!

The Fredster and I made an incredible team today:


  • We left the Manor on time for an 11:30 appointment to have my port flushed (still a questionable sounding activity, in my opinion... I hear someone hiding in an alley, wrapped in a trench coat, hissing, "Wanna get yer port flushed, Lady?"); 



  • Traversing the entire length and most of the width of the hospital campus, we scored a quick, if over-priced, spicy chicken sandwich which we ate in record time under the atrium sky, all whilst recounting amusing anecdotes, Steve Jobs' last words, and providing reconnaissance for one very confused old woman in search of her wayward nephew ("He's my ride!");



  • We arrived for the second appointment early, an integral part of the plot to make the office manager feel guilty, and therefore I was seen at 1:10 rather than 1:30;



  • After some minor difficulties remembering where we parked Ruby, the Honda CR-V, we loaded the wheelchair and zipped down the road about half a mile, pulled into some primo gimp parking, then made nice with Paindood's Evil PA, who was, as anticipated, her usual bitch self;


  • I grabbed the Rx, Fred called for the elevator, and we finessed the pharmacy's minefield such that I owed nothing for meds (and scored free parking, too!).


There were some perplexing moments, like the three identical compliments I received for an ugly toxic lime scarf -- chosen to conceal part of the old lady embroidery on my "wearable art" old lady sweater.  Oh, and the homicidal looks we got from our fellow waiting room denizens as we incessantly commented on the CNN closed captioning.  Hmm, and that smart remark by the PA about "admiring [my] spunk." 

Spunk?  I have spunk?
What is she trying to do, confuse me?

image from microscopesblog.com


The most perplexing of moments, though, may be the one to come.

The only appointment that really mattered to me was the second one, at the pleasant and efficient office of my MDVIP Go-To-Guy.  I cannot remember if I shared the excitement over the development of a FISTULA (woo hoo!) on the inside of my left upper arm... If I didn't, please feign excitement: now!

Look, you would be excited, too, if the only other way to culture the stuff growing in your shoulder joint and humerus were to let the orthopedic surgeon yank your prosthesis in exchange for an antibiotic-laced surgical cement spacer.  (Say that 10 times without taking a breath;  Think that once without abject weeping.)

Because the filthy low-down pathogen in my shoulders has thus far refused to grow in the laboratory, and has returned despite 42 weeks of intravenous antibiotic therapy using potent gorillacillens, despite seven major surgeries, heck yes, I hope that a clear culprit might emerge from today's relatively painless procedure!  My surgeon would love to have an advantage for once, before he has to give the reverse replacement a try -- something that's likely to happen before the end of the year.  If we identified the bacteria and found the correct antibiotic therapy to zap it?  Before the surgery? Happy dances of profound joy!  (Now with actual arm movements, too!)

But.
However...

My MDVIP Go-To-Guy's nurse may not have used the best of techniques when she swabbed the thick, yellow pus (with occasional bloody streaks... What?  You're trying to eat?).  For instance, she may have set one of the swabs down such that the tip was on the counter top. If there is growth in the lab, how can I trust that it isn't a contaminant... and do I bring that possibility up with anyone?  What if it comes back staph?  I have a MRSA history and spent most of ShoulderMan's hospitalizations in strict isolation.  Medical settings are purportedly rife with bugs...

I just went blank while it was going on.  She had to do a fair amount of physical cajoling and basically bullied the thing to get the samples she wanted, so I was sort of lost in Biofeedback Land.  As she was packing up the samples, my shocked mind replayed the images.  Is there a 15 second rule for bacterial culture swabs?

I must add that she's the best nurse I've ever encountered, that I respect her immensely, and even more appreciate the many ways she helps me -- over the phone, in person, and with an awesome and unerring eye for veins-that-will-give-blood.  For all I know, she had scrubbed that counter top just prior to my arrival such that it harbored not a single microbe.

So anyway... we did it, we made it to every appointment, and *early*, too.  I made a kick-ass roasted red pepper soup last night -- meant for the usual Wednesday Festivities that Fred enjoys with the Militant Lesbian Existential Feminists, except that only one of The Gang showed up, and she had to leave early for a dance class... so the soup came home with Fred.  Or that's the story the boy told, anyway.  

Soup with dark rye toast.  A bed.  Purple, swollen legs.  Purple swollen fingers.  A good book with just enough vision left to read it. The satisfaction of having made a dent in my "to do" list.  The hope of something identifiable and treatable growing in the lab.  The hope that nothing grows in the lab except what is in *me*!

Fred was heroic.  Fred is always heroic.

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

Oops.  Almost forgot.  Something did happen that I am working hard to forget but probably should work to understand:  Before we acquiesced to the sexiness of the spicy chicken sandwiches and the hard benches under the hospital atrium sky, we went to the cafeteria.  It was my suggestion, even, born of a fond recollection of their fine frozen yogurt.  Surrounded by medicos in uniform, covered in badges and stethoscopes, with pen lights and bandage scissors peeking out of huge utilitarian pockets... I kinda freaked out.

First, it was incredibly loud and busy.  Remember that I stay in the protective confines of the Haddock family's ancestral home, Marlinspike Hall, except for these exciting blitzkrieg-type forays into the Metro Lone Alp area in central Tête de Hergé.

Remember, also, that this is the hospital where the Sentinel Event (that pretty much ended life as I knew it) occured back in May, 2002.  Yes, it does seem ridiculous to say a Sentinel Event of such magnitude "occured." I never thought I'd lend it a passive voice.  Progress?  Regression?  Denial?  Basic bad grammar?

When I dress Fred in the adjective "heroic," this is what I mean:  He was ahead of me in the cafeteria, carrying two of everything without being asked, when I veered my chair to the one vacant area (by the salad bar, of course).  He must have sensed my distress.  That, or he heard the clunka-clunka of my defective left front wheel stray from his plotted course.  In just a couple of short, well-constructed sentences, he diagnosed my malaise and recommended an immediate exit -- which, I am convinced, saved both the day and my sanity.

I've long suspected that I have PTSD, as embarrassing as that is, given that what I went through is precisely nothing in comparison to the terrors behind the disorder in military and rescue personnel, in people who have been traumatized by real violence.  It was much worse early on -- back in the summer of 2002, I would relive the fall in the hospital ICU every time Erin, my physical therapist, tried to help me stand up beside the hospital bed we had to rent.  I was left with a huge fear of standing -- exactly what I had been trying to do when I went down in May.  Then, until my courage and physical strength was reestablished, I lived with unexpected fears, too -- of fire, of being trapped, of being alone.  It was truly ridiculous.  Let us say that to declare Fred heroic will never be an overstatement, so long as the memory of those awful days persists.

Now my "episodes" are restricted to actual visits to that hospital, seeing one of the guilty doctors or nurses, although sometimes just a memory or a dream can do it.

What must have really primed the pump?  Being hospitalized there last month.  Talk about rebirth of terror, rebroadcast of the ridiculous before, during, and after of the Sentinel Event... But explain to me how that brief visit to the cafeteria eclipsed even the admission as a PTSD trigger?

Therapy?  I don't need no stinking therapy... Besides, we'd have to travel outside the confines of Tête de Hergé, as there are no mental health disorders in the native population here.  Well, none they'll admit to, you know?  There is a huge substance abuse problem, in my opinion, but having the new treatment center located in our barn may influence my conclusions.  Most of the residents continue to be carnies and circus folk from beyond these borders.

Anyway, just this brief exposition has helped me put things back into a more proper perspective.  So thanks for allowing me, O Interwebs, to jettison that mental debris...

Therefore:  Good night to all, and sweet dreams!

*the first reading of the cultures, i am told, will be reported late monday or tuesday... 

Wednesday, September 23, 2009

XXX Porn! Live, Totally Naked Women! XXX Porn!



Now that I have your attention...

One of the top ten subject searches that brings Virgin Readers to elle est belle la seine la seine elle est belle is "Laura Beckett."

Please note that she has nothing whatsoever to do with pornography!

In case you did not know, it's easy as pie to accumulate information about how, when, and from where people access an internet site, even such a humble one as this. The search information provides the occasional hint as to "why" you are here, too! So if you don't want me to know that it is you popping in, que c'est bien toi que est arrivé -- oh, just relax! I'm clueless and your anonymity is assured.

Really. I mean it!

I'll never tell.

Unless they beat it out of me. But even then, I'm not likely to remember.
Honest!

Anyway, I got to thinking [it happens, now and then]:

The last I "heard" -- through my own searching -- Laura Beckett remains paralyzed after her struggle with MRSA that began while she was in Germany pursuing the Ketamine coma treatment for CRPS/RSD. I seem to recall that she is currently in a rehab -- a situation that I hope is temporary. I believe she continues to require assistance breathing -- but I am not completely, reliably sure.

Indeed, we all send out hopeful, curative thoughts into the universe on her behalf.

There is a danger in the "I-read-it-somewhere" proliferation of information. Yes, I know I am participating in that danger -- I may even have a proprietary involvement, at this rate. But the serious searches that lead people to this blog most often pertain to some form of ketamine research, whether it be in Mexico, Germany, or in booster form within the United States, or to CRPS clinical trials.

I am sometimes moved to tears by the search terms -- the descriptive terms for the pain, most often expressed as burning, or as fire, itself; the unanswerable questions, safely posed when alone with a computer, usually about mobility, the loss of a job, of friends, of family, of sanity.

So if you get here by accident, by some haphazard search for new information about CRPS/RSD, please know that you are not alone, and that, as weird as this blog likely seems to you, it is the evidence of my effort to defy this disorder in as major a way as I can. I encourage you to curb your incessant searching and to turn, instead, to creation. You can safely trust that RSDSA, among other organizations, is more up to speed than you or I could ever be, alone.

And didn't Your Mama ever tell you not to trust strangers?


EDIT: My memory is not too messed up. The source of my tidbits of information regarding Mrs. Beckett turns out to be the August 10, 2009 issue of People magazine:

In October 2008, RSD patient and mother of three Laura Beckett, 47, of Magnolia, N.J., developed pneumonia while in a coma in Germany and was kept under for three weeks as doctors fought to save her. She woke up paralyzed from the neck down and now lives at a rehabilitation center. "It's an understatement to say things went wrong," says husband Karl, though he adds his wife's pain was so unbearable they would likely choose the coma again. Says Schwartzman: 'We've had tragic outcomes. But this is only attempted after every other treatment has been tried."


And that reminds me of two other thing I wish to stress:

**My profound respect for Dr. Robert J. Schwartzman, neurology chairman at Philadelphia's Drexel University College of Medicine -- and my gratitude on a personal level for his dedication to helping those living with CRPS.

**My belief that experiences with MRSA (and variations) can be had at any hospital in the world, no matter how clean, no matter how excellent. I do not know the particulars of Laura Beckett's infection. I understand, and am sympathetic to, the desire to blame some person, place, or thing -- but there is nothing good in that, beyond correcting whatever may need correcting. MRSA is a monster of our own creation.


Photo credit for Kitty Porn: Let's Talk Politics

Sunday, February 1, 2009

Laura Beckett Back Home

From the Philadelphia NBC affiliate:

Anonymous Donor Brings Laura Beckett Home

As the air ambulance carrying his sick wife touched down at Atlantic Aviation at the airport, Karl Beckett still couldn't believe the love of his life was home.

This was the moment he had been praying for the last three months.

"We’ve never been apart since we've been together. This is the first time we've ever been apart. Thanksgiving, Christmas, all that, it was just horrible," Beckett said.

Laura Beckett had been stuck in a German hospital since November where she developed a debilitating infection while being treated for RSD, a painful nervous system disorder.

Her family, unable to pay more than $71,000 for an air ambulance to bring her home, turned to NBC10.
An anonymous viewer came to the Beckett's aid, and so did many other generous people.

"You always see it on TV but you never realize stuff like this does happen,"

Karl and the couple’s two sons were there as the plane doors opened.Laura’s son Karl said his emotions ran the gamut as he saw the plane come in.

“A little bit of everything. Mixed emotions, excited, happy, a little sad, my heart was racing. I just want her to get her the proper care she needs," said Laura’s son Karl.

The couple's daughter Jillian, who was on the plane and has been by her mother’s side, was overcome with emotion.

The family can't believe so many people, friends and strangers, came forward to help them.

"I had a gentleman come to the door and anonymously give me a check. It was amazing,” said Karl Beckett.

Craig Poliner of Med Escort worked with the anonymous donor and coordinated Laura’s trip home.

"This is something that doesn't happen every day and so it is it's quite remarkable that somebody stepped up...one of your viewers and we were able to get her home,” Poliner said.

"[The donor] hasn't come forward yet, but when he does I’m gonna give him the biggest hug in the world," Karl Jr. said.

Laura can't speak or move her legs or arms, but she knows that she's back home.

The flight crew said everything went smoothly on the return.

She was immediately taken to a local hospital where doctors will re-assess her condition.

Of course we'll keep you posted.
********************************************************************************

Cherished Readers,

That "[o]f course, we'll keep you posted" comes from the NBC affiliate, not me. I am glad Mrs. Beckett is home and on the mend. Hopefully, she and her family will enjoy their hard gained privacy and withdraw from the frenzy being whipped up.

I am both saddened and intrigued, as always, by the comments made to the series of articles that have been published about her plight, and The Weird Ones that always manage to appear when CRPS is in the media.

If I did not know better, I would be inclined to think what so many ill-informed people [mostly in the medical profession] already think: that there must be a huge psychiatric component to this disorder.

What else would cause people to malign one another with such relative glee, all the while bemoaning the intensity of their suffering. If there weren't this bizarre sense of enjoyment seeping into all the ostensibly reasonable commentary, I'd not make a peep, I swear!

I can understand aberrant behavior being attributed to CRPS -- indeed, a day does not go by that I don't aberrate all over the damned place. I know it is from lack of sleep, and yes, a steady diet of pain and unimaginable sensitivity to touch, to air, to temperature, to mood -- but it is also from social isolation and unrelieved frustrations.

Yes, yes, I know. Studies have concluded that the psychiatric symptoms of anxiety and depression as related to CRPS are the result of the disease, not a cause or integral element of it. Hooray for us! It comforts me no end that I am nuts only *because* of CRPS and did not bring my nuttiness *to* CRPS. Mwahahahaha! Of course, nothing seems to explain away the incessant whining... so I am trying to stop.

Could "we" please make an effort to refrain from trying the ketamine coma therapy in the comments sections of an emotionally driven appeal for funds by a desperate family? Stop tossing the doctors' names around as if you had any authority to judge them -- or, if you feel you absolutely must have your say, find a more suitable place to say it.

Myself? I think there has been a major overreaction about an unfortunate outcome.

Saturday, December 20, 2008

Ce Temps Majuscule

I hope you have enjoyed the hiatus of posting here at Marlinspike Hall, deep, deep in the Tête de Hergé.

et la seine? elle est toujours belle, elle. malgré moi, elle l'est.

The silence is squashed. I was discharged yesterday afternoon, and while still not quite settled back into home life, Fred and I are slowly finding answers and sly techniques to get me and us through this... Time.


Ce Temps -- Majuscule.

Unfortunately, my left shoulder prosthesis is not back with me. Heart/San Francisco. Shoulder/Tête de Hergé. You can't always get what you want...


Surgery on Monday went well, in the sense that the orthopedic surgeon got me through it in great shape and did what he had to do, with panache and one arm tied behind his back.

He's very talented, and somehow "more" than a specialized surgeon -- meaning no disrespect to any other surgeons out there. Most of the orthopedic surgeons I have met are intensely disinterested in the "medical" side of my care, to the extent of neglecting it. Not so with ShoulderMan. He is on top of things and looks a bit askance when I bring up medical concerns. Still, given that *he* is the anomaly, the practice of doublechecking will not fade away any time soon.

Je reviens... Monday, late afternoon, in the hush of the surgical theatre: The prosthesis looked pretty good to him, as did the surrounding area -- not great but not nearly bad enough to explain such pain and dysfunction. He was about to wash it out and close me up when he decided to further check out the sturdiness of the prosthesis. It came loose too easily, so he proceeded to "ream" the shaft of the humerus -- as any talented ShoulderMan would do.


"It exploded with pus and gunk."


"Gunk" is a technical term and if you don't know what it means, well, I don't have time to walk you through Medical Terminology 101. Look it up. Live and learn. Walk and talk. Rock and roll.

The Christmas Mystery? Nothing will grow on the culture plates. Nothing. They are able to get MRSA from zeee nares and zeee skin -- but as for the actual Pus and Gunk? Nothing.

I confessed the pain of the left hip and the former right shoulder -- so they wrapped me up in a lovely off-the-shoulder yellow dress, a bit on the sheer side, with a lovely pair of blue gloves that gave my look the needed *pop* and off we went to interventional radiology in an attempt to aspirate yet more fluid. More Christmas Mystery, but perhaps the pains there can be dismissed due to bone-on-bone contact in the hip and overuse in the arm.

But my Infection Sensors are blipping and bleeping and splurching all over the doggone place. Still, there is nothing that can be done right now. A normal person would probably decide to relax and try to salvage the holiday spirit.
Cough.

We are throwing daily infusions of vancomycin at the invader(s). Six weeks of infusions through the PICC line. (If this were a freaking Gratitude Journal? tee hee! the position of the PICC line is sooooo much better than last time! and the roly-poly plastic balls of vancomycin? why, they're all gold and silver-like, as if jesus came down and gave a fluffy baby kiss on the cheap china plastic and poof! them balls, they turned into holy ornaments! poof! tee hee!)

Just like last time.


I am incredibly grateful to Dr. ShoulderMan, his PA, and his SuperDyke nurse. This does NOT go without saying. So be sure to say it.


The hospital staff? Not so great -- but as the PA said, the solution to that is quite simple: "stay out of the hospital." Wiser words were never said.

We posted signs that said "Please do not touch my legs or right arm without asking permission. I have CRPS Types 1 and 2. It is painful. Thank you."

Yes, you got it! It was like issuing a freaking invitation: Please touch my arms and legs -- pat them, swat them, stroke them -- Because when *you* do it, it doesn't hurt at all!

Anyway, I am home -- in lots of pain, extremely depressed, and challenged -- in those basic ways that ought to be second nature. Don't make me break out that gosh-darned Gratitude Journal shit. I am alive and not in a nursing home.
Yet.
There are people who care, still. Which amazes me.

When did I begin to hate myself?


A great big thank you to Dr. ShoulderMan and staff, the ID people, and All the Intrepid Nurses.

Most of all... my Fred. Dancing around my hospital rooms -- snoring in their corners -- bringing me a piece of pecan pie under the frowning visage of the Diabetes Dominatrix -- enjoying the shows on Animal Planet that we don't get at home (even if the lion gets the baby antelope) -- helping me brush my teeth, letting me pull on him so as to sit on the side of the bed.

And Fred never laughs at my bedhead.

Which makes feeling suicidal a despicably selfish and amoral impetus.