Triggered ER Memories…

I got a canned e-mail from my dad’s medical provider, asking for one of those Press-Ganey surveys to be filled out.   I don’t do those.   They’re a colossal waste of time, and the results are used ‘against’ nurses in ways that are demeaning of the job. They’re a popularity contest for healthcare. Nurses aren’t concierge staff… they’re there primarily to give medical care.  Not have to be subjected to some very fortunate person complaining about not getting coffee ‘sooner’, totally oblivious to the reason it was ‘late’ was that the nurse was doing CPR on someone two doors down.   Anyway, it got me all stirred up, and I wrote the following before seeing that it was a ‘no-reply’ e-mail.  Sneaky them :p

–I’m xxxxx’s DPOAH, and deal with all of his e-mail (I’m his daughter- and a disabled RN). He is pleased with his care w/Dr. Kxxx- no issues whatsoever. I go to some appointments with dad, and also have Dr. Kxxx as an oncologist- great folks in the office area, lab draw folks, and Dr. Kxxx himself. Couldn’t get much better.

As an RN (I still keep my license), I have a general loathing for Press-Ganey, since it doesn’t consider all factors in someone’s care (especially inpatient- like if someone complains about their coffee request being slow to be delivered, while the nurse is tending to someone who is either trying to die, or has coded somewhere down the hall). Totally bogus complaint in the GRAND SCHEME of things… our society is too much about “me”, and not about the entire picture.

IF there are issues, I have no problem contacting the hospital directly. It’s really none of Press-Ganey’s business in my opinion. If you can tell me why their butting in is so important, I’m teachable !

I do have some compliments regarding a couple of tests I had a week or two ago. I had a abdominal and pelvic CT w/contrast and a CXR. The nurse and techs in both departments were outstanding. Lisa and Shannon were in the CT department- both very personable, friendly, and gave great instructions. They had the perfect balance between respecting my knowledge as an RN since 1985, as well as informing me of what was going on (and what needed to happen since I’m on metformin- and getting a follow-up creatinine done 2 days later). Lynette was in x-ray, and came SO quickly to get me for the CXR- very professional as well, and also kind. They made the inconvenience of having to drag my ratty body away from home much less unpleasant. My overall experiences in the outpatient/testing departments have always been good- every last person has been pleasant and professional. I didn’t feel like they were trying to suck up, so that Press-Ganey would be happy… they were genuinely doing a nice job.

I have had my share of nightmares in the ER there…

I haven’t been to that ER in a several years- so this might be outdated (wanna be fair). My experiences there in the early to mid-2000s were horrific. I was considered a ‘frequent flyer’, though many times, someone else called 911 because I’d lost consciousness (I have dysautonomia and documented epilepsy among other things). I could give you a laundry list of abuses and negligence in that place. Maybe it’s better now- I hope so. When I got there because I had actually been awake enough to call for help, I was following my MD’s instructions for when to get help (my blood pressure would drop into the 50s systolically- and it wasn’t safe to NOT get help when just lying down wouldn’t do anything). I still was verbally demeaned- for following my doctor’s instructions.  It’s so important for those in the ER to know that just because THEY aren’t familiar with a diagnosis doesn’t mean that it’s automatically some psych disorder, and they don’t know everything about the person, just because they have some vague medical info on them.  I never asked for pain meds, never had a squadron of unruly family around (never had ANYONE around), never even asked for help to the bathroom- which was partly because the call-light was nowhere to be seen, etc. I was told I was a “wasted bed”, and that “seizure patients never follow up”; (I actually had monthly appointments with my doctor at that time because things were so unstable). It got so bad that I learned to put in my own small gauge NG tube and put in 1/2 strength Gatorade by gravity, to increase my fluids- and take my chances at home. My doc  wasn’t thrilled with that (but I know how to manage an NG safely)- yet she knew what had gone on in the ER from what another doc had told her (he was one of the few nice docs). It’s amazing what medical equipment was available on eBay back then.

On April 1, 2007, I was brought in (BP dropped again), and by the time I got there, with the jostling around, it was better, but I still didn’t feel right… I had had a few weeks of weird symptoms that weren’t quite my ‘normal’ weird. The doc on that night actually refused to examine me. He wouldn’t repeat the BP (meant pushing a button- and he didn’t even have to do that; a nurse was near the monitor). I continued to have odd symptoms after being sent home, and eventually had substernal chest pain radiating into my neck. On April 11, I called my doc’s office and was told to go to a different hospital,  and tell them about the chest pain; THEY would take care of me. Tests showed that  I had multiple chronic, sub-acute, and acute PEs in all three lobes of my right lung and R PA (pulmonary artery). I spent 17 days in the hospital getting regulated on warfarin. The chest pain was from my lung pushing into the apex of my heart. That ER doc’s personal ASSUMPTIONS  at St. Xxxx’s could have cost me my life. As it turned out, it was ‘just’ another blow to my feelings as a sub-human. I didn’t have the typical PE symptoms until the 11th (actually the night before- but I wanted to talk to my doc about what to do since going to St. Xxxx’s ER was just a set-up to be blown off and humiliated).  And the doc didn’t bother to see WHY I’d been there “too much” (his words) in the prior couple of weeks.

Being considered a psych case, I was sent home unable to walk one time- crawled into the cab, then crawled to my front door. Another time, I was put in a wheelchair van, and sent home- if I needed a wheelchair to go home, how was I supposed to manage at home. Alone. ?  One doc began to intubate me without checking to see if I was even awake (I was- I’d just regained consciousness, and saw him walk in the room- alone, no help for suctioning, no meds for a genuine intubation, no indication of what he was going to do)…. he knicked a tonsil going in, cutting it, and setting off my gag reflex- so then I was vomiting blood. A nurse came in, and he eventually pulled the laryngoscope out. He asked me if I’d OD’d (a common assumption- though no drug tests were ever positive), and I said no. He told me that’s all I had to say… he never asked me anything!  I didn’t know what he was going to do (he was behind my head- my eyes back there don’t work well). Then left the room. I was so embarrassed to have vomited- but I guess they call it a gag reflex for a reason.  That nurse was very kind as she helped me get cleaned up… she must have been new.

A nurse put a Foley in one time (I’d lost consciousness at a neighbor’s home, and she’d called 911… I’d had no presyncopal feeling -which I generally did- just awake one minute, and about 3 hours later waking up in the ER). The nurse blew up the catheter balloon up ON my internal sphincter. I said it hurt, and was trying to tell her it hurt WAY more than it should- and she turned around and walked out of the room. She just left.  Absolutely no acknowledgment of what I was saying, yet she was looking at me; she heard me, and saw me trying to move the catheter.  I managed to push it in far enough to actually be in my bladder.  It took 4 liters of fluid to get my systolic BP to hit 80…. I was sent to ICU, and just managed to avoid dopamine (which could have been a disaster for someone with dysautonomia).  I was admitted as an OD– yet NO drug screens  EVER showed any type of drugs.  Really?  Even with evidence, I was still some loathed OD patient?  My doc came to see me the next morning, and told me she’d see if she could enter a note to negate the OD diagnosis.

These are a few things that I will probably never forget… and the ER at St. Xxxx’s still scares me. I sent a few letters to the customer service person (whatever they’re called) at the time, and got the canned letter of ‘we strive for excellence in patient care’, blah, blah, blah. Nothing ever changed, because I was seen as a nut job. NO psych history, no drug abuse, no ODs, nothing psych related at all. Just judgmental nurses and docs who saw me too often for their liking. I (me, myself- no doctor) eventually figured out a medication interaction that was contributing to some of the BP issues (the dysautonomia won’t ever go away- but it helps to not have interactions messing with it). I also started going to another ER if I had stuff going on that required an ER (after the PEs, there were some other incidents of chest discomfort/SOB, as well as hematuria one time, requiring some IM vitamin K, and an overnight stay for a couple of tests and IV antibiotics for a UTI). I’m lucky I went there when I was having symptoms that were eventually diagnosed as AML- subtype M3 (APL). I was there for 6 weeks in isolation, induction chemo, and started 19 months of daily chemo of some type (except for ‘scheduled breaks’ and when I had shingles on my butt). I don’t have confidence that St. Xxxx ER docs would have bothered to check things out. And, I could have ended up like Jeannie Hayes- the WREX anchor who died 2 days after officially being diagnosed, after a brain bleed.

As an RN, I know that some patients are annoying, but that doesn’t mean that there isn’t some genuine medical issue going on as well. I did my best to not bother the ER staff. I did anything they asked of me while I was there. Most of the time, I didn’t make the call to be sent there, and when I did, it was because of my personal doc’s parameters. Nobody deserves to be treated like they’re a crazy HUMAN being, and waste of time. I think some of it is the age of many of the newer nurses, and the overall mentality that ‘work’ is a destination, not a verb. I don’t remember a single nasty tech, lab person, etc… it was always the docs and nurses…. very sad.  And even if I HAD been someone with some psychiatric issues, does that mean that subhuman care is justified?   People ask why those who do have mental health issues don’t get help… I can guess part of the reason.  The humiliation isn’t worth it. 

Anyway, I’m sure this is more than you wanted to hear. I don’t do Press-Ganey, since they don’t address issues I’ve had. They run a popularity contest, and I’m not interested in those.

Have an enjoyable week, and maybe remind the ER staff that they know nothing of the patients’ entire lives… they see a snapshot of a bad time. And regardless, they still don’t deserve to be belittled, or even physically injured because of their prejudice and assumptions.—-  (end of ‘note’)

ER staff gets very little information about a patient’s entire life- or even enough to make a true assessment (or judgement) about the person.  They see symptoms and test results, and whether or not they like the ‘diagnosis’ of patient who is before them.  It’s unprofessional and abusive to not treat someone with compassion.  If it was their family member being talked to in the same manner, they’d be outraged- yet they feel it’s OK to do it to strangers.   I realize that there are some amazing, compassionate emergency rooms out there, with incredibly kind and patient staff nurses and doctors.  I commend them.  They have to deal with whatever walks in the door- and that has to be difficult.

IF it becomes so easy to judge an entire person on a diagnosis (and be less than humane), it’s time to find a new job, or another area of medicine to work in… maybe the morgue.   😉


Another Season of Dysautonomia

It’s so frustrating to be at home watching a movie, and begin to feel the familiar feeling of one side of my face being on fire, my heart rate being erratic, and then the general ‘unwell’ feeling.  I’m at home !  I’m in charge of the thermostat (at 64 degrees).  I’m not moving around when watching the movie.  The film (‘Flight’ – great film about addiction- NOT primarily an airplane suspense film) had to be the trigger.  The autonomic reactions to the various ‘adrenaline’ kicks in the film set me off… and there’s nothing I can do about it now.  A quick glance in the mirror to confirm that the left side of my face is nearly purple-red, while the right side stayed the ‘Midwest winter pale’, and I know what’s going on. The dysautonomia is acting up. Again.  But, I’m not going to stop watching movies or just ‘living’.

In the beginning of the dysautonomia, medication bought me eight years of manageable and employable life.  It took some time to get the right ‘cocktail’ of beta blocker, anticonvulsants, and benzodiazepine, but they worked. It was great! That was a long time ago. But the last few years I worked were pretty dang good.  I’d have occasional ‘spells’, and they were annoying- but my ‘good days’ far outnumbered my ‘bad days’.  I’ve been disabled for nearly 9 years now.  And things have been getting progressively worse.

I’ve had to shave my head to eliminate the source of heat from having thick hair. I’m not kidding. I get the #1 blade on the clippers at the hair cutting place.  The next move is to go to a barber for a straight razor shave.  Losing the hair has helped somewhat, but I’ve got to face facts. I’m getting worse.  I’ve talked about the ice vest before- and it has been extremely helpful.  Without it, there are MD offices that I couldn’t tolerate; their thermostats are set for tropical birds, not humans, in my thermo-biased opinion.  My next option was to be calling ahead to see how things were running as far as delay time in the waiting room, and then sitting in my car in the parking lot (with the AC on), and have the receptionist call me on my cell phone when it was actually time to see the doctor.  The ice vest has helped with that.  I’ve also got ice ‘bandanas’ – one type has actual ice packs in it, and the other is essentially  getting a bandana wet and letting it evaporate.  The ice pack ones do help, but don’t last long, so I have to keep changing out the ice inserts.  I haven’t tried the evaporation one yet… it is visually unimpressive.

People think that winter would be easier. Well, if people didn’t turn their heat on, it’d be wonderful !  But ironically, it’s worse.  I can’t depend on different places keeping the temperatures the same, so it’s a crapshoot as far as how I’ll tolerate being indoors away from home from one place to the next.  I wear the lightest weight coat possible, and remove it immediately when I get somewhere. The ice vest is with me unless I’m going to be in the car the whole time.  I’m only away from home for more than an hour about once a month, to do my main grocery shopping when I get my check.  That finishes me off for the day.  If I’m going somewhere for more than 2-3 hours (once or twice a year- usually Christmas, and maybe one other time), I have to pack the extra bag of ice vest inserts, the cooling ‘reusable dry ice’ packs to keep the inserts activated, and the ice bandana refills. It weighs about 25 pounds or so when it’s fully packed, which then requires the rolling walker since I can’t maintain my balance carrying the ice ‘chest’ and my purse.  Then there are the ‘as needed’ medications to regulate my heart rate and/or blood pressure, water to take meds and stay hydrated, stuff for blood sugar (glucose source and insulin), other diabetic supplies and meters, and my battery operated hand held fan with extra batteries.   Nothing is simple.

I recently found out that the ice vest inserts aren’t allowed in airplane cabins, since they are actually liquid when they ‘thaw’.  The company had enough experience with various airlines to know the TSA issues. I’d need the full pack for pre-boarding time in the terminal, as well as any time in the air. I didn’t have anywhere I needed to be; I just wanted to know the options.  Flying isn’t one of them.

When I’m at home, I can maintain the temperature fairly well, unless my autonomic system is given a swift kick from something I see in a movie, on TV, or even read online. If ‘fight or flight’ is triggered, I’m going to have problems with my heart rate. If I don’t get that under control fast enough, my blood pressure will tank, and I’ll pass out.  It’s a slow dance with everyday life.  And no two days are the same. Triggers are similar, and there is some consistency- but if I’m also tired and/or in pain, stuff gets dicey faster.

But I’m fortunate.  I’m in a safe apartment, and I’m still able to live independently.  I’m not the best housekeeper in the world, since any activity affects heart rate, but I’m slowly getting some things done that had been mucked up by the fatigue of chemotherapy (for leukemia; I’m in remission).  A friend is helping me get stuff taken out of here that I want to donate to a thrift store (and get OUT of my space), and that’s helping a lot.  I’m working on some sort of ‘paced’ vacuuming and dusting.  I’ve got a network of cobwebs that look like miniature ziplines going from corners of rooms to bookcases. I wonder what travels on them…. eek !

So, another season means shifting how I do things and getting used to another aspect of dysautonomia as things get less stable.  Something else becomes another thing to work around. There’s another cooling gizmo to try.  And a list to take to the neurologist for the next visit, to see if more medication adjustments are needed (not fun).  In the twenty years I worked as an RN, I never heard of dysautonomia. I’d heard of autonomic dysreflexia (which is a type of dysautonomia), but nothing along the lines of POTS, neurocardiogenic syncope, or other forms.  Whatever it takes to stay conscious and out of the ER and/or hospital is worth trying. Staying educated is extremely important since most ER docs and nurses aren’t all that familiar with the forms of dysautonomia, if they’ve heard of it at all.

I miss my old life. I miss being a working RN. I keep my license active and do my CEUs for license renewal; I don’t  ever want to have to say I was an RN…. I am an RN.  I just have to keep myself from totally falling apart as best as I can.  With changes in how my body functions, and different medications I’m on, I have to stay fairly up to date with drug interactions and functional adaptive equipment.  I miss being useful.  But, I have to focus on what still works.  I also am thankful that I’ve got the ability to blog, and meet others who, unfortunately, know exactly what I’m talking about when I describe something.


Dysautonomia and Disability- Social Security and Medicare

According to some, I’m nothing but a leech on society.  Here in the US, needing help is seen as being nothing more than a parasitic slug that simply doesn’t want to work. There is no distinction made between those who are lazy (a minority of the people on government assistance), and those who have worked for many years, only to become physically ill and unable to work, by those who ridicule the ‘entitlement’ help out there.  It’s so disheartening to be lumped in the category of those who want handouts. I’d give anything to have my health back.

I spent 20 years working as an RN- in staff, charge, supervisory, and department head positions. Who knows, I may have put an IV in you, or wiped your butt.  I may have been the nurse who called your elderly mom’s doctor 8 times in two days to get an order for her to be seen by a specialist.  I may have spent an hour getting your preemie to drink two ounces of formula. You don’t know. To you, I’m worthless now, and just want ‘entitlements’.  You see me as someone who just wants free stuff… such a cruel and uneducated view.

Well, let me tell you about the ‘free’ stuff. I paid into Medicare during the 25 years I worked (I worked prior to and during nursing school as well as my years as a nurse). I paid into Social Security during those 25 years as well.  I’ve never been on food stamps.  To get Medicaid assistance, I had to meet requirements I didn’t qualify for until a horrendous couple of years of life-threatening blood clots in my lung, and then an aggressive form of leukemia. Those aren’t even the reasons I’m on disability (autonomic dysfunction/dysautonomia and seizures are the culprits there).

To get coverage that meets my medical condition needs, I pay around $500 per MONTH in premiums for Medicare Part B, Medicare Part D, a Medicare supplement that covers what Medicare doesn’t, and prescription co-pays for medications that don’t come in a generic form (insulin is the big one).  That’s not free.  That’s $6000/year (Obamacare or not- it’s BEEN this way for years).   So tell me how I’m living some life on the dole, and just sucking the government dry…

I’m not able to walk more than 100-150 feet without pain that is intense enough to change my plans.  Even with my walker.  To make a sandwich means I’ll hurt. Doing a load of laundry cause intense back and leg spasms.  Bringing my groceries in from the car means a LOT more pain.  I live alone. There is no help for the mundane- I simply have to get it done…or not.  I do the best I can.  And then I see so many hateful comments that don’t differentiate between those who can’t and those who won’t.  And the difference is huge.

To qualify for Social Security Disability isn’t an easy thing.  I had more than 1000 (one thousand- not a typo) pages of medical documentation, so I was approved on the first application. Some people have to appeal several times before they get approved.  People with obvious disorders have more stress by not getting the help that they need.  Do I think that there are people who abuse ‘the system’ ?  Yep.  But I don’t think they are the majority, by a long shot. People become homeless waiting for help- people don’t fake that.  And, I don’t think I’m the only one who feels hated for needing help.  I have a disability policy from the last place I worked- before being sent out by ambulance from work roughly a dozen times during the last 2 months I worked there.  That  private policy allows me to have %66 of my last monthly salary for my total monthly income (with Social Security paying the first part, and the private disability policy paying the balance of the %66). I lost a lot of money by being disabled.  If I didn’t have that policy, I would be living in some pit, in some trashy neighborhood, hoping everyday that nobody shot my windows out.  Do I deserve that simply because my body fell apart?

I never know when my body is going to poop out on me for something as mundane as the thermostat being warmer than I can tolerate. (One former co-worker RN refused to allow me to have a small space on the pediatric floor where I worked to set the thermostat to a temperature I could handle, so I could do my charting- and she was the boss’s pet, so I was screwed… the area I wanted to cool off would not have affected her or the patients in the least….she was simply a cold-hearted bitch with no consideration for what was going on with me; I could have done a big ADA scene, but it really wasn’t worth it for working with Goldilocks… she wasn’t worth it. I’d worked enough different types of nursing to get another job, and keep trying to make it work ).  I don’t even know how stable my internal thermostat will be when I’m at home.  Not working.  I tried to make it work at another job, with fans in my office, and trying to cool off when I felt I was getting overheated, but it simply didn’t work.

The many times I was sent to the ER before, and the first few years after, ending up on disability were a nightmare. I was labelled a ‘frequent flyer’- which is about the most hated label someone can get at an ER.  I was treated like some psycho-drug seeker.  I never asked for anything.  Most of the time, I never remembered getting there via the ambulances.  I wasn’t the one who ‘sent me’ there. My employer had, and I had no say in the matter. I understand they were covering their butts when I was unconscious, because something horrible could be happening- even though most of the time, cooler air and being horizontal were the only things to help.  It sucked.  The ER nurses, and a couple of the doctors, were nasty.  Just plain cruel sometimes.  One of the nice doctors even let my regular doctor know that he’d seen some inappropriate nastiness… but nobody did anything.  I had to just go to a different ER when I knew something was wrong, so I wasn’t blown off.

Real people with real disorders need Social Security (Disability) and Medicare, even though they haven’t hit retirement age.  It’s not a choice… it’s survival.  Without those ‘entitlements’ (that I paid into from the time I was able to work at 16 years old until literally falling over at work repeatedly at age 40), I’d be homeless or dead.  I hate needing these things, since the stereotype by people who don’t know people on disability is that of some bum, mooching off of the government.  I’d love to be working as a nurse again.  I loved being a working RN.  I still keep my license current, even though I’ll never be well enough to use it… but I still want to BE a nurse- not  ‘been’ a nurse.  I worked for that license.  And I loved what I did.

I may be on government assistance, but it’s not free.  It changed my income drastically, and allows me nothing ‘extra’.  I’m doing the best I can, and would encourage everyone to get disability insurance where they work. You never know when something will happen to you.  Nobody plans on becoming disabled.

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.

Could You Just Call And Check On Me In The Morning?

That’s really all I’d gone over to ask my neighbor.  Thank goodness she could tell something was wrong that couldn’t wait until morning.  I had been having a lot of low blood pressure episodes, but this felt very strange, and I was a bit afraid of going to bed and not have someone check to see if I was OK in the morning.  I’m an RN. I’ve lived alone for decades.  I’m glad I knew my neighbor well enough to ask her to call me.  But she could see something was really wrong.  And that’s the last thing I knew until…

…I woke up in the Emergency Room approximately 4 hours later.  Lisa worked late, and got home around 9:00 p.m. , maybe 9:30 p.m. I’d gone over there around the time she got home so I wouldn’t bug her later.  I woke up in the ER and the clock said 1:30 a.m. I’d been unconscious for around four hours.  The dysautonomia was one part of what was going on, I think. Many years later, I realized that a medication interaction was also involved.  Anyway, the first thing I saw off to my right was the doctor counting my medications.  I had a bad habit of adding the last of an old prescription into a bottle I’d recently gotten, to minimize the number of bottles around. They were medications I took routinely, so I knew I’d use them within a short period of time.  The doctor wasn’t amused at my space-saving maneuver as he couldn’t determine if I’d OD’d (no) and on what (nothing).  Once I woke up, he just asked me; I answered him, and he stopped counting.

The next thing I remembered was being told that they needed a urine specimen.  OK, no problem, just let me up and I’ll go pee.  They told me that with my blood pressure being what it was, they weren’t going to let me go anywhere.  That’s the first I’d heard about my blood pressure.  It had taken 4 liters of fluids to get my systolic BP to the upper 70s, and a random 80mm/Hg.  It should have been at least 100 without fluids, and with roughly a gallon of saline, I should have been well into the upper normal range.  It wasn’t happening.  They were sending me to ICU for dopamine if my BP didn’t stay near 80.  If I ‘hovered’ enough at 80, and continued to make sense, they’d hold the dopamine. That’s a resuscitative drug.  I didn’t like the sound of that  whole situation.  But I wasn’t in any condition to argue- they’d stuck a catheter into my bladder (blowing up the balloon on my internal sphincter which HURT-  one should always make sure to push the thing in before blowing up the balloon).  One hose in (IV), and one hose out (Foley).  I was stuck.  I was also more than a bit spooked that I’d  just lost consciousness at my neighbor’s apartment with no warning. I never felt like I was going ‘out’.  I just wasn’t ‘there’ anymore.  I think I kinda know what it feels like to die, until checking into the afterlife (for me that’s Heaven; I’m one of those born-again people).

So, off to ICU for the night.  I was in a bed  in a room with a camera so the nurses’ station could see every move.  Lovely.  Like were was I going?   I kept looking to see what my blood pressure was on the monitor behind me (took some scootching around in the bed), until one of the nurses told me that if I kept watching it, she’d put a towel over the monitor.  Hmmph.  I just wanted to see that I was moving in the right direction. I did not want dopamine.  More plain fluids were running.  I probably should have been thankful for the catheter by the time my kidneys caught up with the volume of IVs pumped into me in a relatively short period of time.  Even though my urine test and blood work showed no abnormal amounts/types of medications in my system, they treated my like an overdose.  Guilty until proven innocent?

My regular doc came by on  morning rounds, and corrected the OD diagnosis.  She knew me well enough to know that ODing wasn’t something I’d be doing. At 41 years old, and not in great health, I was more interested in staying alive.   I didn’t ‘do’ drugs, and had enough medications to take  on a routine basis that I resisted taking prescribed medications that weren’t ‘scheduled’ meds- I didn’t like ‘as needed’ meds at all.  But I didn’t know that two of my medications had been making my life hell, and were likely the cause of my blood pressure dropping to the point of unconsciousness in my neighbor’s living room.  I’d taken the muscle relaxant  Zanaflex for years and had no problems with it (NOT Xanax, the anxiety pill- one physician I saw – once- didn’t know the difference; she now works in the Botox/spa medicine field).  I’d also taken Benadryl as needed for years for allergies.  Well, the two cause really bad hypotension, at least for me.  I had my list of medications and prn OTC meds on a piece of paper in my wallet, and nobody caught it.  I’d been in the ER before for low BP, and all I got was a bunch of nasty attitudes from the nurses, and one doctor in particular. I figured it out later, after changing to a different muscle relaxant because of cost.  All of a sudden, no more severe low blood pressure (I’d actually had mini-strokes from hypotension).  I still had the dysautonomia blood pressure issues- which felt totally different.

Anyway, I got cut loose that morning. I’d been offered another night’s stay in a regular room, but wanted out of there. Had it been a weekend in the Caribbean, I might have reconsidered.  The ICU nurses were actually quite nice.  That ER was known for being nasty and sometimes cruel; I guess the balloon being blown up too soon could have been an accident, but who knows.  I just hope they aren’t that nasty now; I go to a different ER when I need to, which has proven to save my life twice.

I owe my neighbor more than thanks. She literally saved my life.  She also avoided having to have a body removed from her living room (unsightly and deteriorates quickly).  I’ve lost contact with her, as she moved years ago.  I know I thanked her, but I’m not sure I really ‘got’ the extent of what she did at the time.     So thanks, Lisa 🙂