Dysautonomia Awareness Month…. I’m Very ‘Aware’ All Year, Every Year

OK.  October is Dysautonomia Awareness Month… With Breast Cancer Awareness Month at the same time, nobody will care about dysautonomia.  Men are more than likely behind the sanctity of boobs, so along with being a rare disorder that people really are NOT aware of, there is the whole ta ta thing that people go all pink for, and dysautonomia remains a mystery to most, if they ever hear about it at all.  Don’t get me wrong, I’m not ‘against’ cancer awareness, but who on the planet with a pulse and working brainstem isn’t aware of  breast cancer?  I’ve known and do know many women with breast cancer (including my mom, who died in 2003 after surviving multiple cancer sites for 17 years, dying from something unrelated). I understand that any cancer diagnosis is a nightmare (I’ve been there, with leukemia).  (And why is there no blue ribbon with balls on it for testicular cancer awareness? Ladies? ).   Anyway, dysautonomia is something that I’ve lived with for decades- probably longer than it was diagnosed.  It didn’t flatten me until 2004.  And most doctors are clueless.  The general population can’t even pronounce it.  Dis-auto-gnome-ee-ah.

Every morning, I wake up not knowing if I’ll be able to actually get out of bed and begin my day without my head spinning as my blood pressure tanks.  Will my peripheral vision begin to narrow, and will my hearing get muffled?  Or will I actually be able to get up and not have to lie down again?  When I get in the shower, will I get that ‘sweet spot’ in the temperature of the water where I get a nice hot shower, or will it be too hot, and once again start the process of passing out?  My heat intolerance isn’t about temperature preference or comfort, it’s about staying conscious.   My thermostat must stay around or below 64 degrees, or I start to have symptoms.  Fifty degrees is much better if I’m outside.  I wear a light snap-front sweatshirt, left open,  when it’s in the 40s.  If I leave home to go into another building where I have no control over the thermostat, I have to wear 5 pounds of cooling vest inserts.  To stay conscious.  I’ll start to ‘burn up’ for no good reason (and this is NOT hot flashes- I’ve had those, and they are totally different).  Or I’ll get so tired, that doing anything is overwhelming.

I ‘look OK’… aside from being overweight, and having very few eyebrows post chemo (which at this point has to be permanent), I look fine.  That’s all well and good- but it can also be very frustrating when trying to explain why I can’t do something.  I also have multiple ‘other’ medical and orthopedic problems (discs, knees, spine, epilepsy, diabetes, yadda, yadda, yadda…), so when I’m walking I look a bit gimpy, but the dysautonomia is totally invisible if I’m not lit up like a red stop light from severe flushing when the dysautonomia spells kick in.  My thigh muscles have atrophied (probably from diabetes and chemo), which looks weird, and makes walking quite tiresome.  But people really don’t ‘get’ the whole dysautonomia thing.

The autonomic nervous system controls involuntary body functions- blood pressure, heart rate, breathing, flushing, muscle/brain signals, etc.  There are many ways this can all go wrong.  Initially, I had problems with passing out, as well as my right pupil dilating.  Then my gait would get wonky, and eventually I’d keel over and sleep hard for hours.  Temperature dysregulation hadn’t shown up yet.  I was in Texas when this all started, and I did fairly well at first.  When it was first a ‘thing’, I was living in a house (with no central AC- just room units for at night) with a coworker to share expenses (perfect situation; we had opposite schedules, so it was basically like living alone).  My housemate would hear me hit the floor from her room at the other end of the house, and find me passed out on the wood floor.  I thought I was just ‘nervous’ after a recent hospitalization for eating disorders, but she said that there was nothing  ‘nervous’ about me that she’d seen, and she really thought I had some type of medical issue.  One  night I couldn’t get up off the floor like usual, and I agreed that she could call 911.  That started the whole testing process.

I was lucky that I had a neurologist who thought I had dysautonomia. She sent me to see an electrophysiologist (EKG specialist) in San Antonio, who ended up doing a tilt table test.  My blood pressure dropped to 44/16, and heart rate dropped into the 50s (heart rate should go up, and compensate for a low BP, though a BP that low isn’t usually associated with ‘coming back’).  I was put on the first of several meds, and sent home (driving myself 60 miles after nearly passing out).

I continued to have issues with work, but eventually meds were sorted out, and I was doing well enough to get my work done. Additional disorders were ruled out (MS, myasthenia gravis, pheochromocytoma, brain tumor, stroke, etc).   The nursing home I went to work at had some very accommodating supervisors, which made a huge difference in not being panicky when I felt something coming on (the prior place did a lot of ‘threatening’, and since I was the only RN on campus at a drug/alcohol detox center on weekends, I understood the need for a conscious employee :p – but I didn’t want to stop working; being a nurse is who I AM).  I had a mattress overlay in my office at the nursing home,  to put on the floor if I needed to lie down.  I also had a fan from home, as temperature had begun to be something I had to keep ‘moderate’.  If an episode hit, I lied down; when it was over, I finished my work.

Fast forward, and I’m back in Illinois in my hometown, trying to keep things together at work, and it just started falling more and  more apart. I was hauled out by ambulance 10-12 times in a month or so at another nursing home (office job), and it was clear that I wasn’t able to keep working. I’d left a pediatric hospital job since I was terrified I’d get dizzy/lightheaded when handling very tiny babies (or larger, heavy ones), and that just wasn’t something I was willing to risk (along with some other issues with the job itself).  I had to deal with a new neurologist on my insurance plan at the hospital, who seemed clueless.  Once on disability (and Medicare two years after that), I found a neurologist who did know about dysautonomia, as well as a internal medicine doc who was quite familiar with the disorder.  With multiple medications (roughly 25 pills/day on a good day; more if not- and 3-4 shots of insulin) and total control over my thermostat, I’m able to sit up for several hours, but  I have to get up every few minutes to avoid any ‘pooling’ of blood in my legs, or I’ll enter the ‘pre-syncope zone’ when I stand up.

Now, my ‘normal’ consists of having the air conditioner on when it’s 30 degrees Fahrenheit outside.  When there is snow piled up outside, my AC unit is the only one with space around it where the snow has melted from the heat generated by the AC.  I leave home about 2-3 times a month– monthly grocery shopping, a doctor’s appointment here and there, and maybe a short trip to the grocery store about half-way between disability checks, for milk and/or bread.  Everything has to be ‘paced’.  If I do laundry, I can’t unload the dishwasher.  If I take trash to the dumpster, I can’t vacuum in the same day.  And I struggle to maintain any muscle tone, to avoid getting worse… but the chemo I had to have to survive the leukemia has caused deterioration.  I guess there are tradeoffs with everything.  Nothing is taken for granted.

Being on Medicare has been a horrific eye-opener.  I used to do the assessments that determined reimbursement for Medicare patients at the nursing home I worked at in Texas.  I was superficially familiar with Medicare.  Then I was on it.  Medicare is expensive.  There is the part B (doctors’ office and equipment/supply part) monthly premium (about $110).  There is the supplement plan since Medicare doesn’t cover huge portions of hospitalizations and tests (so add another $325 per month).  The part D (prescription plan) is about $75 per month, and between over the counter medications I MUST have, as well as paying out of pocket for insulin, that adds about $125/month (I’ll get into insulin in another post).  SO if all goes well, $635/month goes out the door for medical expenses.   That pretty much ensures no out of pocket expenses for doctor’s office visits, tests, and (knock on wood) hospital costs.  When I was in for 6 weeks for leukemia in 2010, the bill was $300K…. nearly 1/3 of a million dollars.  I will make my last payment on what they didn’t write off this month.  Four and a  half years later.  That’s not included in the $635.

Dysautonomia can be mild or fatal.  With the chemo causing deterioration, and knowing what I was like beforehand, I don’t think I have the fatal type (Johnny Cash did).  I have the invisible, life-altering, disabling, survivable kind.  Some symptoms may be worse than others on different days.  I can have one cheek very hot, and flushed to almost a blue-red, while the other is cool and has normal coloring.  I can have blue fingernails, not from lack of oxygen, but because of constricted blood flow.   My heart rate has dropped into the 30’s for no good reason (that bought me 5 days on a cardiac floor with nurses who were very nervous about the epilepsy- padding the side rails and putting a bed alarm on my mattress that went off if I got up to go to the bathroom- and GADS, they panicked when I got up to walk in the halls for some type of activity one night…. how did they think I lived at home?  Alarmed, padded bed?).  Sometimes one arm is flushed and hot, and the other cool and pale.  I’ve looked ‘dead’ per one former supervisor, with breathing so shallow and extreme paleness, it scared her many times.  I live alone, so have had to learn what sets me off… sometimes it’s as simple as a ‘scare’ on a TV show that wasn’t expected.  But heat and pain are my main triggers.  I’m in constant, chronic pain- that’s harder to control than the temperature.

Some people have POTS (postural orthostatic tachycardic syndrome), which causes symptoms if someone is standing. At all.   Their heart rate goes out of control simply by being vertical. Lots of folks with that need wheelchairs for safety.  There is neurocardiogenic syncope- which is actually a simple faint, until it’s a pattern.  There is pure autonomic failure – where nothing works right most of the time.  Shy-Drager syndrome is one of those total failure syndromes, and even saliva production is involved.  Dysautonomia isn’t one thing.  It’s a combination of symptoms that are generated by an abnormality of the autonomic nervous system.  Some are relatively minor, and others require feeding tubes, and other external measures to make it survivable.  More people have dysautonomia than are diagnosed, per research estimates. It can affect any age group or gender, though females tend to be diagnosed more often.  It can be seen as a conversion disorder or other emotionally based problem, which causes improper diagnoses, and completely inappropriate medications.  I encourage anyone who finds their symptoms listed in the informational links to talk to their doctor.  There isn’t a cure, but it’s generally not fatal, and can be treated.  Getting used to the new normal is the hardest part, as is not being understood.

See the following for more information:

www.ndrf.org 

www.dysautonomiainternational.org

www.dinet.org

 

 

 

 

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Chronic Pain in Its Various Forms…and Dysautonomia

While I’ve lost count of the exact number of days, this current ‘spell’ of severe headaches has gone on for at least 4-5 weeks, with maybe five or six days of no headaches at all in any given day.  Of course, it isn’t ‘just’ a headache.  I get the dreaded nausea along with it.   There have been times during most days when the pain lessens, but most of the time it’s there.  Today has been pretty bad- I’m taking a chance by blogging, since the scrolling on a page can make things worse, but I have to ‘talk’ to someone.

I e-mailed my primary doc about changing the nausea meds. After several years on Compazine, it seems it’s lost its touch. The leftover Zofran (from chemotherapy for leukemia) doesn’t do much anymore, either.  She called in some Phenergan for me.  The pharmacy didn’t have the full 90-day supply available, but my dad brought me the 12 pills they had. They will call when the rest of it is available.  I was just so thankful to get anything that may offer a bit of relief from something.

I’ve been trying various ‘schedules’ of different pain meds, from different over-the-counter pain killers (Excedrin, Aleve) to a weaker  prescription med (tramadol) to a stronger prescription med (Norco 10/325).  None of it is working.   I even did a ‘bad’ thing today before taking any other prescription meds (so no risk of interactions) and took some methadone that I have leftover from a while back. It isn’t working, and I’m not willing to take another dose before talking to my pain management doctor.  He’s a board certified pain management doc, and not a ‘doctor feel-good’.  He has ‘rules’, which I respect.  I don’t want a doc who calls things in over the phone without assessing me.  I don’t want the drugs per se. I want less pain.  I don’t expect to ever be pain free, but I would like a lesser degree of pain.

Pain-free isn’t a realistic expectation with degenerative disc disease, degenerative joint disease, fibromyalgia, bulging discs (neck),  diabetic nerve pain,  and chronic headaches.  I’m just looking for a degree of relief that keeps me able to take care of the basic chores around home, and keeps me able to do some ‘minimal’  fun activities, such as watching a movie on TV, playing some online games, playing with my puppy, or other such forms of distraction and entertainment.  The last time I talked to my pain doc, we talked about the nature of degenerative disorders… they don’t get better by definition.  The fibromyalgia and headaches are just ‘bonus’ disorders 😦

I have to be careful about pain in regards to the dysautonomia, as well.  Pain is one of my major ‘triggers’ for heart rate and blood pressure changes that can land me on the floor, passed out.  Those who have severe menstrual cramps that cause lightheadedness and feeling ‘faint’ go through something that is essentially a result of the same thing- vasovagal nerve stimulation.  Vasovagal syncope (fainting) is fairly common. But any sort of fainting is a risk for injury.  And injury is a risk for further mobility limitations. I can’t risk that.  I want to continue to live on my own, and I can’t afford help (nor do I want someone hovering over me). Side effects of many pain meds also increase the risk of lowered blood pressure.  I have to keep that in mind with any new medication, as the interactions with the other meds I take can be risky.  I ‘ground’ myself to home when I am put on any new meds, just to be sure I’m not caught off guard at the grocery store or pharmacy (about the only places I go) with some drop in blood pressure from a new med not playing nicely with something else I’m on.

I’m going to have to go see my pain management doctor soon, to discuss a different plan.  I’ve been on stronger meds before, but have asked to go back on weaker meds, knowing that this is a lifelong thing, and I need options for the future.  For the degenerative disorders, spine surgery and another knee replacement are likely down the line, as well as hip replacements. I want to postpone those as long as possible. 😮  There is the possibility of having some sort of pain-nerve impulse thingie implanted (I need to read more about that).  I’m not all that gung ho about ‘stuff’ being put into my body that involves hardware.  I’m hoping that the weight loss with Nutrisystem will also help my knees and hips… my spine is a wreck from neck to bum, so weight loss will be good, but not a ‘fix’.

Methadone scares me. And, today, it’s not working.  But, it might be something I have to try more regularly to get a final ‘verdict’ as far as its real efficacy.  I’m also very reluctant to take methadone after working drug/alcohol rehab, and seeing how it is THE worst in terms of withdrawal. Those patients made heroin detox look like a cakewalk – and heroin addicts had it bad enough.  I understand that I wouldn’t be taking it for illegal drug replacement, and that chronic pain patients who take medications as prescribed are highly unlikely to develop true addiction (different than physical tolerance or physical dependence).  Only %3-5 of patients who take pain medications as prescribed go on to become addicted (which includes the strong psychological components of the ‘high’, cravings, etc). Ninety-five to ninety-seven percent of us don’t become addicted.  The ‘tolerance’ and dependence may require dosage adjustments.  That’s not because of addiction, but the physical acclimation of the body to the medication.  It gets used to the drug being there, and requires dosage changes to continue to provide pain relief.  I don’t like that, but I understand it.

I’ve also been on the fentanyl patch.  I don’t remember it being all that great at the dose I was on, but it might be something else that is considered.  The nice thing about ‘the patch’ was a continuous release of medication, so no ups and downs depending on me taking another dose.  It was also not hard to stop taking.  That has huge ‘benefit’ written all over it.  When I wanted to go off of it, I was weaned down to lower dose patches, and then given pain pills to taper off of the narcotics altogether- no withdrawal symptoms, and it didn’t take that long.

For ‘breakthrough pain’ on either methadone or fentanyl (or the current Norco), I’ve taken tramadol.  It’s not as likely to interact with the stronger narcotics or create an increased risk for respiratory depression (which is essentially what causes death in drug overdoses- accidental or otherwise).  It’s not a great pain killer, but it can take the edge off of the joint, muscle, and head pain that is getting worse.  Things like ibuprofen and naproxen sodium have limited use with the headaches and fibromyalgia.  They do help with the joint and disc disease to some degree, with no neurological or cardiovascular effects.  Worth having around  and taking !

I’ve tried physical therapy, chiropracters, Imitrex (which helped somewhat), heat (but that triggers the dysautonomia), cold, TENS unit, various pillows, and stuff to unclog my sinuses.  If I thought chewing on the siding of my house would help, I’d be out there with the woodpeckers.  While I’m not losing time off of work (been disabled since 2004), this pain of various sorts does change what I am able to do here AT home.  Things like laundry, vacuuming, other cleaning, etc are put on hold quite often.  If I’m having one of the ‘bad’ days, there’s no way I’ll get in a car and go to the grocery store, pharmacy, or MD appointments (the only places I go).

All I know is that the past several weeks (that have come in waves for years) are getting really old. I’m going to have to stop being stubborn about the stronger meds if I want any quality of life between ‘waves’.  I’m already limited. I want to have as much ability to function as possible, and this level and duration of pain isn’t OK.  My pain doc has been very good about letting me let him know when I need something stronger, since I’ve been so hard-headed about using the stuff.  He knows when I say I’ve had ‘enough’ that  I’m not looking for drugs- I want to not hurt (as much).  I need to make the appointment, and go see him (he does NO prescribing/refills over the phone past the ones on any written prescription).  He does NO dosage or medication changes over the phone.  So, I have to drag my butt in there.  He’ll probably do some sort of injection (spine, jaw, neck, occipital nerve blocks, facet injections). The ones in my lower spine seem to help the most- I could tell that my legs hurt less when I’m at the store after I got the last shot.  I may ask for my left knee to get zapped.

Now to just find a day to go and see him when I feel well enough to see a doctor.  But even though it’s been pretty unpleasant lately, I realize that I have so much to be thankful for.  I know that God hasn’t deserted me, and that I can get a lot of comfort in knowing that whenever I get to eternity, I’ll get a new body without pain.  That helps. 🙂

Update:   After being on CPAP for more than a year, the daily headaches are pretty much gone !  They were caused by hypoxia from not breathing at night.  The rest of the stuff is still a bummer, and I’m off to see my regular MD today (10-19-2016) to get medical clearance for massages and a chiropractor.

Emergency Room From Hell

There is a local emergency room that actually scares me.  I’m not the only one- whenever I mention its name to someone (even my new oncologist who works for the same organization) the reaction is usually “Oh, I know what you mean. I/my brother/mom/dad/friend/ etc went there and almost killed me/them.”  Their posted patient satisfaction percentages have been in the %60 range. That is BAD.  Hospitals run on patient satisfaction surveys (which is a whole other nightmare for healthcare professionals).  Reputations are hard to fix.  What is so bizarre is that the rest of the hospital is fine, or at least survivable. I’ve had many outpatient tests, a couple of admissions from the ER, and also a knee replacement at the same place, and the staff was good.  I did have some complications after the knee replacement that were figured out a bit late, but nothing as bad as their ER.

One time when I was admitted, I had a nurse tell me that I needed to go home.  At the time, I was on a heart monitor because my heart rate had dropped into the 30s and was being erratic. But she looked familiar- I think she was one of the hags from the ER who was working on the cardiac floor.  I never could figure out how nurses could be so nasty.  I’ve had some unlikable patients, and some that were really unpleasant to deal with- but I’d never be inhumane or callously disregard their dignity.

I’ve got multiple chronic illnesses, and I’ve been an RN since 1985.  I’m on disability, but I keep my license current, and I know the appropriate manner in which to speak to and deal with patients. I’ve been a staff nurse, supervisor, charge nurse, and department head.  I’ve also been sent to various ERs over the years, though this scary one has been the worst, hands down.  I was often sent there from work, unconscious, either from being post-ictal (what happens after seizures when people sleep very deeply) or my blood pressure bottomed out from my autonomic nervous system not working right (dysautonomia), and I’d pass out.

Other times, someone called 911 when they were either with me, or on the phone with me, and they could tell something wasn’t right (turned out I had some medication interactions that weren’t figured out for quite a while that contributed to some of the blood pressure problems).  I was labelled a ‘frequent flyer’, which is an extremely derogatory term given to patients who generally don’t have primary doctors and are often non-compliant. Neither of those applied to me. I saw my regular doctor monthly, and all blood levels of anticonvulsants were always therapeutic. I’m on disability because my seizures are not controlled. I’ve had testing done to see if part of my brain could be removed to stop the seizures, and that turned out not to be possible without causing more damage than it could help.  I’m not some joke patient who shows up for the heck of it (I’ve been accused of being bored, and using the ER for entertainment at the bad one).

But, the nurses and doctors at this ER didn’t care about me as a human at all. They never asked about regular doctor visits.  I was told I was a ‘wasted bed’ because I’d been brought in with seizures.  I was told that it was highly unlikely that I was compliant with anything.  They didn’t understand- or even try to find out- what I was really like as a patient- when I said anything that contradicted their assumptions, it was ignored. They made their assumptions and treated me as the parasite they thought I was.  The dysautonomia isn’t all that common as a given diagnosis.  It causes extremes in blood pressure and heart rates (and for me, heat and pain are major triggers).  My blood pressure would drop to a dangerous level at home  and per my primary doctor’s instructions, I would call 911 when it got below 70/50.  It was often much lower, and the lowest I know it to have gone is 44/16 during a tilt table test.  Even with objective symptoms, I was treated like a head case.

I rarely remember getting to the ER.  I had learned that when I woke up and saw the drop ceilings and bright lights and equipment, I was in the ER.  One night I woke up and a doctor was counting my pills from medication bottles EMS had brought from my apartment when a neighbor called them after I passed out in her apartment.  I asked him what he was doing, and he asked if I’d overdosed. I said definitely not- and asked what happened. It had taken 4 bags of IV fluids to get my blood pressure up to 80 systolic, and the nurses were getting me ready to go to ICU for dopamine (a resuscitative drug to maintain blood pressure). I ended up not needing it, since I managed to stay around 80 systolic, and I was making sense once I regained consciousness. But in the preparation to send me to ICU, a urinary catheter was inserted.  The balloon that keeps it inside was inflated before it got all the way into my bladder, and stretched my internal sphincter (what keeps the urine in the bladder) and upper urethra…talk about pain. I told the nurse it wasn’t all the way in, and she turned to leave the room without saying a word. I pushed it in the rest of the way myself.

Another time, I had just ‘come to’ and saw a doctor walking past the stretcher. I was still groggy, and he didn’t say anything to me, so I didn’t talk to him. I didn’t know what he wanted (or for sure that he was even a doctor for that matter- some guy in a white coat). He proceeded to begin to insert a breathing tube into my airway- something that isn’t done without someone to suction in case the patient vomits, some paralytic drugs to dull the gag reflex (to prevent vomiting) and calm the patient IF they need to be intubated, and without asking the patient if they are awake and know what is going on.  I have no idea why he wanted to intubate me (which more than likely would have landed me on a ventilator). He started putting the metal blade of the laryngoscope down my throat (has a light on it to see where to put the tube), and then the tube, which did trigger my gag reflex and I started to throw up. I turned my head to the right to let the puke fall out, and the metal blade (still down my throat) nicked my right tonsil, and it started bleeding. A nurse came in (finally) and since I was trying to breathe and reflexively trying to get the stuff out of my mouth and airway, they tied me down.  The doctor finally took the stuff out of my mouth and asked if I’d OD’d… I said “No!”.  He said “That’s all you had to say.” I couldn’t believe it… that was all HE had to ask !  I didn’t even know why I was there (still don’t), and it was HIS job to assess me before attempting to put in an endotracheal tube. It could be that because he assumed I’d OD’d that they were going to pump my stomach, and the ET tube was part of keeping my airway safe. But, nobody said anything to me. My medical record would have shown other ER visits with similar symptoms and ‘clean’ drug screens… There was one nurse who was helping me get cleaned up after the throwing up who was kind. She had a daughter with seizures and understood the post-ictal period.  I was just mortified.

I never got on the call light (when I could reach it), and would undo the monitors myself if I had to go to the bathroom, and put myself back on the monitors when I got back. I never asked for pain meds. I didn’t ask for anything.  I was never there for psychiatric reasons (patients who are not thought of well in most medical facilities, mostly from lack of knowledge and exposure to the various disorders). And yet I was treated like I was a total pain in the butt and whack job.

When someone comes out of seizures, there is generally a period of time when they are either extremely sleepy (and even coma-like) or mildly confused for a little while. Not everyone ‘comes to’ the same way. Not everyone has ‘TV seizures’.  I have complex partial seizures that turn into generalized seizures at times (when I end up ‘out cold’ the worst).  When I come to, I can hear things first, and then gradually get back up to speed- but sometimes my response time is slow.  The nurses at this ER from hell didn’t like that, so they’d double team me and put TWO  ammonia inhalants under my nose and hold them there as I gasped for air.  I was awake and knew what they were doing- but I wasn’t ‘all the way back’, so my response time was too slow for them- so they assumed I was a psych case being difficult. Or faking.  They were punitive.

When Social Security was reviewing my disability paperwork, they had over 1000 pages of medical documentation over the previous 3 years, including abnormal EEGs (brain wave tests used to help diagnose seizures/epilepsy) and blood pressure crashes.  But the nurses at that ER thought I was a nut job.  I was horrified that SO many nurses like that exist.  When I’d worked in Texas for 17 years before returning to Illinois, I worked with great nurses. Even if someone wasn’t necessarily going to be a ‘friend’ outside of work, I never saw cruelty or pure meanness.  We had a lot of wild shifts at work- and I never saw one of my coworkers in Texas act like those hostile nurses in that one ER.  I’d worked in another hospital in this town (pediatrics) and then a nursing home- and those nurses were also good to their patients.  But the nurses in that ER of the religiously-affiliated hospital were downright nasty. The docs weren’t much better.

When I was taken in for very low blood sugar one time, they got my blood sugar up with two ‘amps’ of D50 (sugar solution given IV), and then called a cab.  The nurse told me that it would be about 45 minutes until the cab got there, and I should wait in the waiting room. Basic treatment of hypoglycemia instructs people to eat a snack with protein and fat to prevent blood pressure from crashing again once the D50 ‘wears off’, unless their next meal is within the next 30 minutes.  I was sent to the waiting room with nothing (usually a half a sandwich, or peanut butter and crackers is standard hospital fare for low blood sugar after it’s brought back up).  Fortunately, I had my purse with some change for vending machines, and my own blood sugar monitor.  Within a few minutes, I could feel my blood sugar dropping even though I’d gotten a bag of peanuts from the machine.  I tried Coke, and it was still dropping. When I told the person at the triage window, she told me I’d already been treated, and if a nurse had time she’d come and talk to me.  I was safer on my own.

There had been a weird period of time when I was having episodes that were much like the autonomic disorder, and a bit like seizures, but not quite. I had been in the ER (per home health instructions) several times in one month. One night, I was having more trouble with my blood pressure, and went to the ER. The doctor actually told me I’d been there too much that month, and he wasn’t going to do anything. I asked if they could at least check my blood pressure again (it had come up somewhat from being moved from the ambulance stretcher to the ER gurney), and he refused to tell the nurse to simply push the button to do another BP reading.  He never got within 5 feet of me.  Ten days later, I had severe chest pain, and ended up going to another ER (per the instructions of my doctor’s nurse, who was affiliated with the scary place), and it was discovered that I had multiple blood clots in my right lung (all three lobes) and right pulmonary artery that were pushing into the base of my heart, causing EKG changes that showed my heart wasn’t getting enough oxygen (just from the pressure of the junk in my lung).  The clots were of various ages- acute, subacute, and chronic- so would have been present during the time when the doctor negligently blew me off. He could have killed me with that decision.

I’ve written to the hospital with the creepy ER, and got the standard ‘we aim to give the best possible care’ letters. My own doctor was told by one of the few nice doctors at the bad ER that he’d witnessed how I’d been treated. It wasn’t just me being snarky.  My doctor believed me. The ‘new’ ER saved my life.  I had asked the doc at the ‘good place’ that night the pulmonary emboli were found if I could go home and get a few things since I was being admitted for a few days, and she told me she didn’t think I’d live that long; the next night I was in ICU getting clot-busting drugs when I started having the same pain again.  I’d driven myself to the ER… not recommended.

For those in nursing school, new grads, or starting to work with different types of patients,   consider this:  You aren’t going to understand everything about everybody you encounter as a nurse. But just because YOU don’t get it doesn’t mean it’s OK to take out your lack of knowledge on the patient,  who could very well teach you something.  Cruelty during urgent/unstable medical situations  is never justified.  And it’s not something that can be ‘fixed’ later. You represent where you work, and your profession.  It’s not about you when you’re assigned to take care of someone.