Saturday, May 9, 2009

Neuro Time

This past week, a bunch of two-faced, aging, good-intentioned white men repeatedly advised me to "rest and heal." These self-same advisors booked me for nine medical appointments. The Fredster and I are exhausted and Ruby the Honda CR-V gently coos and softly honks her need for tender loving care, and maybe a rinse to stave off the sticky pollen.

My body is torn up, the recipient of speed bumps and humps, the jostling of those huge metal plates that cover up an aged and failing infrastructure, the intimate physics of sweetheart curves. The seatbelt alone has become an instrument of torture. At least the freshly operated shoulder is on the left this go-'round

The cost of the various parking garages leaves me with but a pittance in cash. We spent over $35 just for the privilege of stashing Ruby in a Gimp Space. I am going to put a baseball bat in the car, so that I can destroy the many cars being parked in Gimp Spaces by Non-Gimps. Very frustrating.

Of the nine appointments, four were at the Infectious Disease Dude's place. No, of course not, there is nothing I would rather do than be stuck again and again for bloodwork because my PICC line will receive various antibiotic cocktails, but will not release any blood. CrazyLadyNurse had, thankfully, saved several week's worth of gossip about her divorce and her well-endowed new boyfriend. I was delighted to learn that her bedsheets get caught on his amazingly large johnson and that playing "tent" has become a favorite passtime. The Nurse:Pharmacist is a relief, being very normal and polite. She just got back from ten days in Hawaii and it shows -- All of us punked-out sick folk stared at her healthy tan with envy.

Why were we there so often? Because the ID doc was not pleased with the vancomycin trough levels, so there was much dicking around with the dosage. Given that he cannot even justify why we are using vanco again, it is irritating to then get caught up in such minutia.

I finally managed to make and keep an appointment with my neurologist -- I'd last been there in June 2008. His eyes bugged out when I explained the year+ long saga of osteomyelitis and infected prostheses, the two stays in ICU, the vents, the steady worstening of CRPS. He praised my failure to go insane, then pretty much wrote me off as intractable -- with spreading, intractable disease. I wanted to cry, but did not.

And, true to himself, he again muttered his objection that "spreading" is not the appropriate moniker for the phenomenon of CRPS/RSD symptoms, ummm, invading? moving into? branching out? into other areas of the body than the area affected first -- in my case, my right lower leg and left lower arm. Apparently, the concept is hard to explain, because he has never satisfactorily done so -- or, more likely, he does not believe that CRPS/RSD jumps ship from original injury sites to other limbs or internal organs.

{*Whatever*, as the kids say...}

No matter how the phenomenon is fueled, the results are the same as in my other areas of causalgia, so I don't worry about winning a war of words. I mean, look how the new label CRPS has *not* caught on; Even longterm sufferers don't get the distinction between Types 1 and 2 -- forget health care professionals... (I still hear the echo of the nurses in ICU.)

The reality of all the infections of the last year or so has, at least, made our decision about the pain pump or the SCS easy -- there is no way either could be "installed," given my body's lack of fondness for implants. Of all the members of my medical "team," Neuro Man has been the stalwart one in insisting on following through with a procedural approach before writing each off as a waste. The first time we met, he set me up to see a doctor who specialized in treating CRPS/RSD with the whole range of injections, blocks, epidurals, etc. At that point in time, I was insane with pain and confusion. I was reading anything I could get my hands on, talking to anyone who seemed to have a clue.

There quickly came a day when -- after the sixth lumbar block with no effect except spasms and a slight warming of the limbs -- I questioned why we were pursuing a tactic that did not work. I especially questioned why none of these procedures were being followed up with intense PT -- what I understood to be the crux of the matter. That was my last appointment with Dr. ProcedureMan -- later, I read where he was accused of embezzlement and fraud -- along with his brother, an accountant.

Neuro Man cares a lot, and I appreciate that. It's not his fault that there is no wealth of knowledge to inform the treatment of CRPS/RSD. He cares too much. I end up worried about him at the end of every visit -- also, I leave confused, now, as to any sort of future plan. That's my fault, though, explicitly. I hear my voice -- raspy, infected -- as I told him "I don't even want to know what the future holds... because it looks pretty obvious." He gave me a hug -- the kind that doesn't actually touch. An air-hug.

He is hung up on pain -- he completely gets how bad it is, and is always angered that I live with high levels, constantly. He wants me to take scads of meds that, yes, probably would eliminate many symptoms -- but at the expense of consciousness.

Here and here , one finds brief primers on CRPS pain and its lists of usual drug suspects to treat each sort of pain -- from electric and lancinating to localized and sharp to sleep-disruptive to spaz attacks.

The question becomes, as hours pass into days, days to months, to years -- what quality of life remains after throwing all these pills (and more) at the suffering?

I had hoped he had some new trick up his Hawaiian sleeves.

Clinical Trials for CRPS/RSD

I can't sleep -- so in this uninspired state, I thought I would try to keep some promises, such as regularly updating the list of clinical trials relating to CRPS/RSD. Click on the study titles to obtain more information and, if you should participate in one, best of luck!

1 Recruiting: Effect of Delta-9-Tetrahydrocannabinol on the Prevention of Chronic Pain in Patients With Acute CRPS (ETIC-Study) Conditions: Complex Regional Pain Syndromes; CRPS
Intervention: Drug: Delta9-Tetrahydrocannabinol

2 Recruiting: Safety and Efficacy Study of Ethosuximide for the Treatment of Complex Regional Pain Syndrome (CRPS). Condition: Complex Regional Pain Syndrome
Interventions: Drug: Placebo; Drug: Ethosuximide

3 Not yet recruiting: Graded Exposure (GEXP) in Vivo Versus Physiotherapy in Complex Regional Pain Syndrome Type I (CRPS-I) Condition: Complex Regional Pain Syndrome Type I
Interventions: Behavioral: Graded exposure in vivo; Behavioral: Physiotherapy

4 Not yet recruiting: Pain Exposure Physical Therapy (PEPT) Versus CBO in Patients With Complex Regional Pain Syndrome Type I (CRPS-1) Condition: Complex Regional Pain Syndrome, Type I
Interventions: Procedure: PEPT; Procedure: CBO standard

5 Recruiting: Autonomic Dysfunction and Spinal Cord Stimulation in Complex Regional Pain Syndrome Condition: Complex Regional Pain Syndrome
Interventions: Device: Spinal Cord Stimulator; Other: CRPS patients under treatment other than spinal cord stimulator

6 Recruiting: Pregabalin Versus Placebo as an Add on for Complex Regional Pain Syndrome (CPRS) of the Upper Limb Managed by Stellate Ganglion Block (The PREGA Study) Condition: Complex Regional Pain Syndromes
Interventions: Drug: Pregabalin; Other: Placebo

7 Recruiting: Evoked Fields After Median and Ulnar Stimulation Condition: Complex Regional Pain Syndromes
Intervention: Procedure: Evoked fields before and after a local block (Xylocaine)

8 Not yet recruiting: The Effect of Transcranial Direct Current Stimulation (t-DCS) On the P300 Component of Event-Related Potentials in Patients With Chronic Neuropathic Pain Due To CRPS or Diabetic Neuropathy Conditions: Diabetic Neuropathies; Complex Regional Pain Syndrome Type II
Intervention: Device: TDCS/sham procedure on five consecutive days

9 Recruiting: A Study of the Effect of Lenalidamide on Complex Regional Pain Syndrome Type 1 Condition: Complex Regional Pain Syndrome, Type 1
Intervention: Drug: Lenalidamide

10 Recruiting: Double Blind Placebo Controlled Study of Outpatient Intravenous Ketamine for the Treatment of CRPS Condition: Complex Regional Pain Syndrome
Interventions: Drug: Ketamine; Other: IV NSS; Other: Normal Saline

11 Recruiting: Association Between Focal Dystonia and Complex Regional Pain Syndrome Conditions: Focal Dystonia; Peripheral Nervous System Disease

12 Recruiting: Evaluation and Diagnosis of People With Pain and Fatigue Syndromes Conditions: Fatigue; Fibromyalgia; Pain; Complex Regional Pain Syndrome; Reflex Sympathetic Dystrophy

13 Recruiting: The Efficacy of Motor Cortex Stimulation for Pain Control Conditions: Neuropathic Pain; Phantom Limb Pain; Stump Pain; Brachial Plexus Avulsion; Deafferentation Pain; Facial Pain; Complex Regional Pain Syndrome
Intervention: Device: motor cortex stimulation

14 Recruiting: Regional Anesthesia Military Battlefield Pain Outcomes Study Conditions: Anxiety Disorders; Complex Regional Pain Syndrome Type II; Depressive Disorders; Post-Traumatic Stress Disorder; Substance Abuse
Intervention: Procedure: Regional Anesthesia

15 Recruiting: Neurotropin to Treat Chronic Neuropathic Pain Conditions: Causalgia; Reflex Sympathetic Dystrophy
Intervention: Drug: Neurotropin

16 Recruiting: Susceptibility to Chronic Post-Traumatic Extremity Pain Condition: Chronic Pain

Friday, May 8, 2009

T-shirt Fodder

A few minutes ago, I submitted a comment on another blog, and used the expression "...and all I got was this lousy T-shirt."

So, of course, I plugged the phrase into Google and ran across this, which cracked me up. Now I am worried that I have fallen prey to moral putrefaction.

I hate when that happens.

My grandparents went to Auschwitz and all I got was this lousy T-shirt

Tuesday, May 5, 2009

Catharsis, continued

I thought that hospitalists were internal medicine doctors, widely and deeply trained to deal with most every medical issue under the fluorescent lights of the hospital sky...

But I ended up being cared for by four hospitalists -- two were internal medicine doctors, one was an "intensivist," and the fourth specialized in "pulmonology." In addition, there was a cardiologist, a neurologist, my superb orthopedic surgeon's wondrous PA (Dr. ShoulderMan himself flew off to South America right after surgery), the pain management service (excellent folks), and the ID guru.

So explain to me how I ended up having to call my MDVIP (pseudo-concierge) go-to-guy from the ICU in order to get the folks listed above to actually *do* something that made sense?

Explain how my sore throat, which pre-dated the admission, was ignored -- how a simple order like lidocaine spray had to be made and remade three times, and the spray never arrived? Sounds like nothing, but it turns out it was a major deal. The ID's PA immediately added a Z-pack to the i.v. vancomycin yesterday -- and hooray, my fears of not-breathing are mostly allayed. I have to say that the PAs involved in my care hit homeruns -- they listened, they heard. She was the first to *hear* when it started, that it was not related to the intubation, that it was getting worse -- and to discover that the pre-op chest film already showed lower lobe pneumonia.

Ah hell. I need to get this stuff off my congested chest.

Interesting how medicos introduce themselves to patients, how they address the lazy bastards lolling around in those oh-so-comfy beds... A Bette-Midler look-alike was one of the internal medicine hospitalists. We first met while I was on the ventilator -- strangely lucid and trying to answer everyone's questions with paper and pencil. She had a lovely habit of not letting me finish writing -- trying to guess the next word, even grabbing the clipboard out of my hands and holding it up like we were doing a first grade show-and-tell. There was a complicated issue involving the interpretation of my echocardiogram, done a week prior to admission -- it had been misread (as a normal trileaflet aortic valve when, in actuality, it was a congenital bicuspid valve that was quite thickened and leaking, etc) and explaining this while intubated and hurting beaucoup was hard -- Bette Midler kept butting in. It took the cardiologist to save the day, as he muttered, "Let's just get another one..."

Bette never introduced herself. At all. The nurses, complete with eye rolls, did that for her. Two days later, back up on the ortho floor, she came charging into the room, threw back the covers, and began an unprecedented exam of my abdomen -- always top priority after shoulder surgeries. She looked vaguely familiar but I had trouble placing her -- she scared me to death. I kept saying "Who are you?" and she kept up her dedicated search of my belly. She was panicked, apparently, by the fact that my blood sugar had dropped into the 40s subsequent to an insulin injection. I was asymptomatic, drank some juice, and was given an i.v. dose of dextrose -- the blood sugar was up to 105.

She continued to ignore me, and began yelling at the nurse. I finally pretty much screamed, "Who are you?" The nurse placated her... I explained, upon her eventual introduction, that I was not "technically" diabetic, but that my blood sugar went up when infection reigned (as then) and when receiving stress-dose steroids (as I was then). I objected to the insulin, asking instead that she restart my oral meds, and allow me to finesse my hospital diet (have you ever looked at an ADA clear liquid diet??? It was all sugar!). She went ballistic and I began to regard her as an excellent cartoon.

I refused all insulin from that point on -- I mean, gee, an hour or so after getting the last injection, I had tanked -- duh! I had another medico reorder my normal meds, and never (well, only once) had another abnormal reading afterward.

Did she address the issue of me not breathing? The exacerbation-unto-hellishness of CRPS/RSD? The Fredster is convinced that CRPS/RSD is behind every symptom that presents... Did she take the time to go over the meds that actually were messed up? Do common sensical things like order the foley removed or discontinue the oxygen -- anything to expedite me getting the hell out of there and home. No, her last visit, announced by a tumbleweed whirlwind, consisted of her standing at the foot of the bed, both hands on my exposed, swollen, purple, ice cold, 10/10 pain-leveled ankles, saying something about the god-damned blood sugars and her objection to my use of oral meds.

She started a pain cycle that hasn't stopped yet. I was speechless from the pain, then in tears. I get that she thinks Amaryl will cause another "hypoglycemic" episode -- though pointing out the conspicuous role of insulin was futile.

She then gave me the results of several tests I did not have (MRIs -- impossible due to my bionic nature, and a TEE). I was also released with someone else's paperwork.

The other internal medicine hospitalist decided to go with the theory that the three episodes of respiratory arrest were due to seizure activity. He couldn't be budged from this opinion, despite the neurologist's own eye-rolling. I still have the damned goo in my hair from the EEG. I *have* a seizure disorder -- myoclonic -- but it is extremely well controlled and it's been years since it reared its ugly head -- I did not lose consciousness, or twitch, or nuttin' -- during the first two "episodes."

The pulmonologist was interested only in my lungs -- fair enough -- though he missed the preexisting pneumonia and decided to ignore the low O2 readings (and related alarm beeping beeping beeping beeping) during the last 24 hours there. He repeatedly asked me if I was sure I wasn't on oxygen at home. I repeatedly said something like "Hmmm, let me think. Ummm, no!" Still, he did his job, stayed within the lines of his "scope."

The intensivist? Crass as hell, rude, probably never heard a word I said -- and was the best of The Hospital-Acquired White-Coated Creatures. He made soliloquies, overweight, shakespearian as all get out. The one that allowed me to somewhat trust him? "You are in the worst possible place for your CRPS. There is nothing but stimulation down here..."

Geez. So many cooks, none really giving a damn about quality control (and very bad about passing on information one to another, failing to order schtuff because of the assumption that this was someone else's domain), never taking a history, even.

I woke in the wee hours of Tuesday morning, reached for a pen to write Fred a note, and was unable to grip it. I've had radial nerve palsy in that hand before -- but now it was the whole hand that wouldn't work. I found this alarming. Not one nurse, not one doctor took it seriously. I know that time is the cure -- but given everything that had gone on, I needed to hear that. My left arm was twice normal size following the surgery, so it mattered -- being handless. With a week's time, it has greatly improved, and now has an ulnar nerve distribution. As it happens, I see my neurologist on Friday, so at least it will get evaluated. What should a hospitalist do in this case?

I get the distinct impression that no one gives a royal shit if someone who was already pretty ill and disabled suffers worse illness and new disability -- I am a throw-away. Surely I am accustomed to things being bad, getting worse.

We would have been so much better served by remaining under the care of the orthopedic surgeon -- someone needed to orchestrate... even if the musical score sucks.

Whew. That's better. It wasn't my intent to relate so many pointless details -- but I was shocked.

The other shock was at the level of basic patient care. My sheets were never changed, except for a new top sheet whenever I managed to pour coffee everywhere. Smile. Fred gave me my one bath. The ICU nurse answered my request to "wash up" with: "Oh, they love to do that kind of thing on the floor. Let's wait..."

Thanks for listening -- whether you actually have or not. If not for the GD Sentinel Event back in 2002, would any of this be traumatic? I am trying to turn off the memory banks, trying to not fear you people... And the good definitely outnumber the bad. I think with great comfort and confidence of the respiratory therapists who saved the day, nurse Gwen who saved my life and gave all the glory to God (amazing, the number of nurses who want to PRAY with the patients! Oy!), Dana who kept me company during the last two beeping beeping nights, and who did some great nursing by violating orders and inventing a few protocols... And I am enormously thankful for the intensivist hospitalist and his direct approach, and for getting me breathing again.

Great food service, friendly housekeeping, stupid pain scores!

Monday, May 4, 2009

Four Dead in Ohio

O Lord, Hear My Prayer

I find it difficult right now to write anything. Putting cogent thoughts together, or even messy ones, distresses.

Just plain exhaustion and an increasingly pervasive depression.

Today, infectious disease appointments -- to draw a vancomycin "trough" level, get PICC dressing changed, etc.

Tuesday, The Boutiqueur and the infectious disease infusion center.

Wednesday, the orthopods -- stitches out? Some sort of plan?

Thursday -- sleep.

Friday, Hawaiian-Shirted Neuro-Man, a supremely important appointment.

We are infusing every morning at 11 am, though we'd like to edge that more toward noon.

It's babyish, but my throat bothers me more than anything -- it represents air and life, I guess. On the way to the hospital last week, Fred and I pooh-poohed said sore throat. Then, after being tubed, both for surgery and for intensivists' amusement, it was horrible. I sound like a croaking toad. Fred checked it and saw white patches on the side that hurts -- the ID Guy, when I finally whined enough that he actually looked, said it was "an ulcer." Fred rechecked it, saw no ulcer, still saw white stuff. The Bette-Midler-Lookalike Hearsepitalist -- oh, did we clash -- flashed a light on the right side of my throat and chirped that she didn't see anything. I'm sure she didn't.

I asked for throat lozenges beginning on Tuesday evening. They were reordered twice. Never showed up. When The Fredster settled me in bed here in my beloved Marlinspike Hall, deep, deep in the Tête de Hergé, he ran by the grocery and picked up four flavors, all sugar-free. Some lowfat plain yogurt. Feline supplies.

The dead zone in my right lung is back, in spades. ["in spades"?] Technically, I have pneumonia. Thick yellow crap. You are welcome!

The Boutiqueur, from a distance of safety, opined over the phone that maybe what happened was an assault by mucus plug. All I know is that I have reexperienced the breathless terror twice at home when the I-cannot-swallow thing happened. He always tells me it is anxiety.

I don't think so. It doesn't happen when I am anxious, for one. For two, I am fairly insightful about my emotional life, cognizant of schtuff like anxiety.

Back away, back away from the volatile.

Would you believe that the only "washing up" that happened in the hospital happened with Fred's help on Wednesday night? That the bed sheets were never changed -- only a new top sheet whenever I managed to spill coffee on it. Cough. Patient care? What patient care? It was all meds, meds, meds. If Fred hadn't been there, my teeth would have grown brown fuzz.

Hey, maybe that was the idea. My brown-fuzzed teeth were at the center of a grand immunological experiment. I'm just saying.

I made an ICU nurse cry. And not from hurt, oh no. She wanted to KILL me. I kid you not. Is it my fault that she was the person who finally pushed me over the edge? She decided to invent information rather than say "don't know but will find out..." That happened a lot. I consider it lying and, at least, unhelpful to my recovery to be given misinformation. She lied about the echo results, about the monitored bed, about the phone, about my meds, about the palsy in my hand -- but above all? She ignored, and was pissed off by, my frequent frequent frequent requests that she stop-the-fuck touching my legs.

I don't do the 20 out of 10 pain scale crap. For the first time ever, in hospital, at least, I went to 10/10. It felt like every nerve fiber, muscle fiber, was twitching nonstop. My legs burned like dry old wood in a fresh flame. Yes, very Joan of Arc -- nod to Leonard Cohen (and Jennifer Warnes). No, I don't see my battle as kin to her fiery epic; Yes, I find the transcripts of her interrogations and trials fascinating reading.

So, anyway, it hurt like hell. My right foot and leg were caught up in horrible contractures. Every time someone decided to pat my knees, pass a cord or tube over my body, brush me with their humongous booby, it was like an electrical jolt that served to amplify the pain that had already been keeping me company.

I would say to This Weepy Nursey, "Please don't touch me..." This Weepy Nursey would snarl, "I know, I know, you don't like to be touched." Like to be touched? Hell, I LOVE being touched. Ah, but don't go down that road. Let her think I am just some effed-up eccentric.

They all had their ID cards hanging by lanyards around their tiny little easily-snapped necks. Bend over a patient's bed and these laminated thangs, they land on the patient. "But I didn't touch you. Gaawwwddd!" complained This Bitch of a Weepy Nurse. Leaving me to explain about ID cards, cords, tubes, boobies -- sounding like an insane person. Leaving This Bitch of a Weepy Nurse to roll her eyes, and do it again.

"But I BARELY touched you!"

So I had a meltdown. So I called her some sort of idiot in front of a colleague. So I maligned her knowledge base. She had it coming. "You don't have to talk to me like I am an idiot. Just explain it to me," said This Bitch of a Weepy [sobsob] Nurse. "Apparently, I do," was my response.

She actually brought me my standard dose of methadone as a response to the pain arc. When I told her something more immediate and short-acting was called for, she practically threw it at me and I could see "Effing Drug Addict" play across the marquee of her mind. I spared her a recitation of the half-life of methadone.

I take 15 mg of percocet for bad breakthrough pain. Two 7.5/325 tablets. And that's what the pain management service ordered for me in hospital. This Bitch of a Weepy [sobsob] Nurse, however, decided that since they only carried 5 mg tablets, that two 5 mg percocets was the equivalent order. Hellloooo? I tried pointing out that if we tried three 5 mg tablets, we'd be doin' good. But that's too much Tylenol, she countered. Damned if it doesn't come in immediate release form without ANY apap, and at the 15 mg dose, too...

Once out of ICU, there was no quibbling back-and-forth about it. People also had to be told "please don't touch; please ask/tell before touching" only twice or so, and then were kind enough to spread the word. The problem on the floor? Inexplicable! Big old white bandage on left shoulder... But still, fairly hefty "pats" on the shoulder. I never said anything, but felt my pupils explode and the smile on my face freeze into a death mask grimace... That hurt a heck of a lot less than the slightest touch to my arms or legs.

I've got to stop.

In case you don't see it, or get it, or feel it? I think there is PTSD lurking in me whenever stuff goes even slightly wrong in the hospital -- when things go majorly wrong? As Mr. T might opine: "I pity the fool."

It goes back to May 22, 2002.

The final thing that wants to leak out of my fingertips this morning, before trying to clean up this bloated corpse and set off to see the ID folk, is an accounting of how frustrating it is to explain to the student nurse in ICU that the ventilator had been turned off for a trial prior to extubation. "It's breathing for you, sweety!" she kept chirping. I wanted to scratch her face off. Finally, I put my hand on my chest, so that she could see its rise and fall versus the non-activity of the machine. "oh!" she said, and ran out of the room, ostensibly "to tell somebody." Thank God for Respiratory Therapists... I had been started on my "trial" a good 45 minutes earlier, unbeknownst to my caretakers.

See? That kind of thing doesn't matter. Best to forget it. Don't dwell on the negative. Make like a duck and let it roll off your back. Don't sweat the small stuff.

Have you ever had pneumonia, lousy O2 sats, and tried to breathe through a straw, all the while trying to positively impress the People in White with your... vivacity?

All right, next time? I will continue to exorcise my demons, particularly The Bette-Midler-Lookalike Hearsepitalist who tried to kill me with insulin.

I am so grateful for this space.

And I am sorry for making the nurse cry, for enraging her, for putting her down. I am sorry I told her that the ICU needed to do an inservice on CRPS/RSD. I was basically alone, and afraid, and in pain. And stuck back in 2002, when forces -- in the guise of Doctors and Nurses -- conspired to devastate me.

Someone, Anyone -- give me a week, and then kick me in the butt. Okay?

(O Lord, Hear my prayer! Let something treatable have grown in the lab, one of Your smaller creations that wants a more hospitable home.)