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 they 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 tolerable.  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.  Not even a close second comes to mind.   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.

The Why of Loss

I remember when a dear friend of mine died unexpectedly a few years ago, I couldn’t get past the question ‘why?’.  She had been through several complications and surgeries from a knee replacement, coupled with her longterm steroid use for rheumatoid arthritis.  Her muscles, tendons, and tissues were weakened by those steroids that she had to have in order to treat the arthritis.  When she was found dead one morning on her daughter and son-in-law’s floor, I couldn’t comprehend it. I had talked to her the night before, and she sounded great!

I had talked to her nearly daily since she’d moved in with them in another state, to be closer to her grandkids (she was so excited!). I had talked to her daily from each of the rehab facilities she had been in following the various surgeries.  She wanted a nurse’s input regarding some of what was going on, or for me to explain how things work in nursing and rehab facilities (one of which was a kinda creepy). She had done well during the various phases of her surgeries for the knee issues, until another complication set in. When I talked to her the night before she died, she asked me to call her the morning, as she’d be at home alone. She was perfectly safe doing that even with her cast. She was someone who just got it done. But she said she’d feel better if she knew someone was going to check on her- so I told her “no problem”.

When I called several times that next morning, and got a busy signal, I knew something was wrong. The house phone had more than one line. One line should be open.  A few hours later, her daughter called and confirmed what I already knew in my gut. She was gone.  It had apparently been very sudden, as she was next to the bed.  I couldn’t grasp it.  It still bugs me sometimes, but I understand that she didn’t suffer.  She’d been through so much.  At least the end wasn’t painful, like the years of rheumatoid arthritis had been.  I still miss her like crazy; we’d been neighbors, and while we hadn’t known each other for that many years, we had near daily contact during the last eighteen months or so.

When my mom got sick during her winter with my dad in Arizona, I was livid at the treatment she got (or didn’t get). The emergency room in Sun City West had blown her off. She had been brought in by ambulance, unconscious after a seizure- and they couldn’t get blood samples to find out if she had some sort of systemic infection (sepsis)- but they got an IV in. Most competent ERs get the blood from the IV site before they hook it up to fluids (if fluids are started- which they were). They got a urine specimen, that showed a bad urinary tract infection, which along with the altered level of consciousness should have screamed urosepsis (when the bladder infection gets so bad it gets into the bloodstream) and the need for admission to ICU for IV antibiotics.  That is SO basic, and yet it was ignored. She was sent home with my dad on antibiotic pills.  She was semi-conscious and they sent her home on pills (the home they were renting).  It took three people to get her into the car on the hospital end- they didn’t care how she got out of the car at home….with my 71 year old father as her only caretaker.  He found some friends to help, but he shouldn’t have been in that position. Period.

My take on the whole Arizona ER situation is that they saw my mom as some disposable dementia patient who had a ‘Do Not Resuscitate’ request IF she was to the point of needing resuscitation. But her heart hadn’t stopped. She had a treatable problem.  She had been with my dad to an art museum the day before. She still enjoyed things, even if just for the moment- but in the eyes of those medical ‘professionals’ the hospital people, she wasn’t worth the time. The hospital had been full; several people were waiting in the ER for a room. But the greater Phoenix area has many, many hospitals. A competent ER doctor would have sent her to another hospital, and that would have been appropriate. Instead, my dad had to make arrangements to fly her back to Chicago  after a few days of those antibiotic pills (crushed in applesauce) to make her just well enough to fly. When I went to help get her off of the airplane, the flight attendant told me that dad had to hold mom’s head up for most of the flight back. He’d left his car in the parking lot of Sky Harbor Airport in Phoenix, and flew with what he had on his back. The original plan was for me to pick her up with a family friend on this end of things, and dad drive the three days back. But the airlines wisely required that dad fly with her.

It’s a good thing that dad was with her, since he never would have made it back from Phoenix before she died. She was admitted to the hospital as soon as we got into town from O’Hare (airport near Chicago- for those outside of the US), and was dead within 48 hours.  Gone. I’ll never know if she would have had a chance IF the hospital in Arizona had done the right thing.  They took that away from us.  But, she also didn’t end up getting even more demented and lying in a nursing home, not knowing anybody.  I’d moved back from Texas just 3 1/2 months earlier to make sure she stayed out of a nursing home as long as it was physically possible for me to help dad keep her at home… and then she was dead.

I think about a 90+ year old lady who had been admitted to a nursing home I had just started working at in Texas. She had developed  kidney failure after a severe bleed in her gastrointestinal (gut) tract. The blood loss was so bad that her kidneys didn’t get enough blood to keep them functioning. The family decided that she was not going to get dialysis- the only thing that would keep her alive. She was admitted to the nursing home not knowing her own name or why she was there. This was a lady who had been living on her own, in her own house, doing her own yard work, etc.

Her life had changed in one single day. The aftereffects of that day lasted the rest of her 34 days. She got to the nursing home 17 days after the bleeding started. She left the nursing home a couple of weeks after that, following continued deterioration, and readmission to the hospital (and a physician who didn’t return calls to nursing homes; he was a problem).  Without dialysis, her body couldn’t even get stable. Her legs leaked fluid from the loss of proteins in her system, causing pools on the floor under her wheelchair, for the brief periods of time she tolerated being up. And her skin became fragile, and ‘broken’. The really sad part of that lady’s story is that her family decided that they’d like to profit from her death, and held the nursing home (four of us who worked there) responsible- even though they were the ones who refused the dialysis (and I understand why they made that decision- it would have been a miserable existence for someone who didn’t understand why it was happening- and getting a shunt into her blood vessels would have been a nightmare of torn vessels from the low protein levels). The doctor was never named in the lawsuit; he also didn’t help our defense attorney (provided by the corporation that owned the nursing home).

I was one of the people sued for wrongful death. To a nurse, that’s like saying I killed her. The lawyers had absolutely NO interest in the truth, or even the entire story- they just wanted some way to make money. Period. I felt like I was being accused of murder. I took care of that woman the best way I could; she was dying when she got there.  There was division  in the family about whether or not to sue- and nobody ever visited or called when I was on duty during the day, so I never even met the person who initiated the lawsuit.  What that lawsuit did was erase most of what made that woman who she was– an independent elderly woman who was amazingly strong and intelligent, and reduced her to a lawsuit.  The lawyers eventually settled, which angered me. I was ready to go to court. After a grueling seven (7) hour deposition, I wanted to see it through. But lawsuits don’t work that way- they just destroy people on one side, and issue a paycheck to someone on the other side (and their lawyers).  When there is some evidence of absolute negligence or malpractice, that’s one thing. When someone dies because their body breaks down, and someone wants to blame someone for it, that’s something else. 😦

Lousy things happen. Sometimes, there is some nice explanation, and it’s somewhat expected, even though it still leaves a sense of shock and deep, deep loss.  With each of the three examples above, I have to look at one thing: at least it wasn’t worse.  My friend could have ended up in a nursing home for life dependent on people to help her with basic mobility, her mind intact- that would have crushed her independent spirit.  My mom could have also ended up in a nursing home, oblivious to anybody or anything around her for years– at least she still recognized people up until 36 hours before she died. And dad and I were both with her- he wasn’t on the road, and I wasn’t stuck here waiting for both of  them to be able to get here, unable to have those last days with her.  With the lady in the nursing home, well, her situation was pretty bad all the way around. And it was made worse by the displaced grief and anger of at least one family member,  and questionable intra-family dynamics. She will always be associated with ‘the lawsuit’– not a sweet lady who had been changed by tragic and unpredictable physical disease.

I can’t pretend to understand why God allows some things to happen. I can understand why things fall apart from a medical standpoint. When one thing is going on, it’s usually pretty straightforward. When there are complications and coexisting problems, that makes it easier to understand in my head, though my heart has trouble catching up. I do know that in God’s timing and purpose, all things work together for good.  That doesn’t take the pain away, but it does help me realize that there is a much bigger frame of reference for things than my human brain can comprehend.  God has it under control- and He’s with me when I do or don’t understand why some things happen.  Sometimes it’s just so hard not to want to be able to make sense of it all….and some things just don’t make sense.  Except to God.