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.   😉

Answering “Search Engine” Questions…

When I look at my site stats, I see the search engine topics that people are using to find information…. I’m using this post to answer some of those questions, in hopes of helping folks a bit ❤  I will edit at times to add more information as I see new topics.

Today, I saw a search for leg pain and leukemia M-3….  I do remember leg pain, with the chemo.  Several of the medications used had musculoskeletal pain as a side effect. ATRA and I think arsenic can cause pain.  I had more pain as the year of maintenance went on- I was on ATRA, methotrexate, and M6 mercaptopurine at the time.

I also saw a search for diabetes and chemo- my blood sugars went nuts when I was on chemo. They’re just now getting back to some sort of normal range.  It took several months and a trip to a Joslin affiliated endocrinologist for some insulin and metformin adjustments.

I just saw a search for ‘what could have gone wrong in the ER when someone dies from leukemia there’…. well, some leukemias are known for being really bad for causing ‘bleeds’ – sometimes in the brain (can be fatal very quickly), and sometimes in other parts of the body that can be really significant before they’re detected.  Also, leukemia is known for not protecting the body from infection- so someone could have a really bad infection and not be able to fight it- but if they didn’t know they had leukemia, they might not get help until the body couldn’t keep going (septic shock).  Leukemia can show up in ERs for the first time. Sometimes, the only time it shows up is during an autopsy.  😦

As far as people dying from APL in this day and age, yes. It happens. I know of 2 people in the last 6 weeks who died within 2 days of being diagnosed.  Because the blood clotting cells (platelets) are very low with APL when it is diagnosed, there is a huge risk for severe, and possibly fatal hemorrhages in the body or brain.  Those can be lethal very quickly.  APL also causes impaired ability for the body to fight infections. That can also cause death.  I was lucky to be diagnosed in time; some people are diagnosed at their autopsies.  But I was also very sick.  I got infections, and also tiny purple spots all over my legs and abdomen from low platelets. I got 13 platelet transfusions and 12 blood transfusions.   If APL isn’t treated it IS fatal. End of story.  If it is treated, but the disease is too advanced, or infections are too severe, death is a very real possibility. As an RN, I understood what was happening to me, but I was too worn out to really pay much attention…but I was SICK !!

If someone goes to the emergency room with advanced APL, it is VERY possible that the ER didn’t do anything wrong.  The disease was simply too advanced.  If someone goes to the ER because of severe headaches or decreasing level of consciousness (or coma), the brain bleed has already happened.  The ER is NOT the place for APL to be treated. They can identify lab work that indicates the probability of some type of leukemia, but it takes a bone marrow biopsy and specialized testing in specific labs (often not in the actual hospital since it is SO specific) to determine the type of leukemia. But the most an ER can do is identify the probable problem, and send the patient to the proper part of the hospital for complete diagnosis, and specific treatment.

Another search engine term I’ve seen more than once on my site stats involves defining what a ‘frequent flyer’ is in regards to an emergency room.  ERs consider someone to be a frequent flyer if they are in the ER a lot, and often if they are either looking for pain medications OR don’t have a primary doctor of their own. Frequent flyers are not regarded well by ER staff.  Most of the time (not always) the frequent flyers go to the ER for things that aren’t actual emergencies.  Many also visit several local ERs to either get meds or see a physician for something that is really not appropriate to have cared for in an ER.  They waste resources in many cases. They cost a lot of money (many also don’t have insurance).  SOMETIMES, the ER really doesn’t have a clue why someone is in their ER- they make judgements about the person that aren’t true.  But in most cases, frequent flyers are there because they made the decision to go to the ER and seek some sort of ‘care’.

For : ‘If I’ve had leukemia for over 3 years is it too late to fix this?”- it really depends on the type of leukemia- if you’ve had it for that long and hadn’t been diagnosed or treated, it sounds like a slower chronic form (if you have leukemia at all– there are other things that can have similar symptoms)- whether it’s myelocytic or lymphocytic requires specific testing.  It’s not over until it’s over !  See your doctor, and get it checked out 🙂

Whoever is entering ‘two nurses having sex’, ‘nurses sex’, ‘nurse sex’, or other inappropriate terms into the search engines- GET HELP.   It’s repulsive to have some pervert finding my posts.  If you wonder how two nurses have sex, they don’t have any special parts.  If you want some twisted porn site, then go to ‘porn’, and look there. GO AWAY.   Geez- you’re at it every. damn. day.   Get a magazine and go deal with yourself.

How to pronounce the Swedish cheese bondost spelled Bond Ost…. in English, it comes out like this :  Bónd Oost.  The ‘bond’ is more like booned. But not as long with the o’s.  If that makes sense- LOL.  😉

As far as recipes for Swedish sylta- there are some great Swedish recipes if you just enter exactly what you did…. how to make Swedish sylta.  I personally don’t like veal jello 🙂

For the person asking about the schnauzer waking up gasping and breathing heavily- and why dogs hold their heads up to breathe when they have heart failure :  The dogs’ hearts aren’t pumping oxygenated blood effectively, so they gasp to get more air… they hold their heads up because sometimes the heart becomes so enlarged (I saw my dog’s chest x-ray- it’s dramatic) it actually shifts the windpipe, and it’s ‘bent’.   Medications and prescription diets can help- one of my dogs made it 12 GOOD months. My dog who died 10 days ago made it about 9 months or so.

“Roof of my mouth is smoothed out”….. that happened to me when I got the induction chemo for APL (leukemia).  It went back to normal within a month or so after the last day of the induction chemo, and the consolidation and maintenance did not have that effect on my mouth.

A really important search engine term today:  ‘In ‘mission’ (remission) from APL leukemia for a year so won’t relapse’…. YES- you CAN relapse- that is why follow-up care is so important !  You didn’t go through all of that chemo for nothing !!  Keep following up with your oncologist !  You can relapse at any time, though my understanding is that after 5 years of CONTINUOUS remission, you are considered ‘permanent remission’ or cured.

To the bulimic who ‘pucked up blood clots’…. GO TO THE EMERGENCY ROOM.  Your esophagus could be tearing, which is fatal if not treated.  No joke. Get yourself seen by a doctor.  Suck it up, and get some help ❤  It’s scary, but you seriously could be getting ready to blow your esophagus (or stomach) and bleed to death.

OK…. here’s a favorite one (and it’s from today !!)  ‘witch side of the syringe is the cc side’ (sic)…  Here’s a tip. If you don’t know, put the syringe DOWN !!  If you’re in some sort of training to learn to use them, they will tell you.  If you have a legitimate reason for handling syringes, there is someone to ask- and it’s a valid question. But to ask that in a search engine search bar tells me something isn’t quite right, possibly !  🙂

To the person who entered “can you get disability for not being able to wipe your butt?” in the search engine, how about this- with that level of dumb ass you might just qualify.  Disability isn’t a joke. You, however, are.  Do you have any idea what being disabled actually means?  Do you have any human DNA? Or are you just so mentally disturbed that you don’t care?   If the lack of ability for personal hygiene is part of an actual disorder, then maybe…. just maybe you (or whoever) would qualify. Go ask someone who might know your situation, and quit looking up offensive topics.  OR play in traffic – the results of that may land you on disability.

Edit:  I guess I was annoyed that day 😮   Disability still isn’t a joke, and is a demeaning place to end up.  It’s not a career destination.  😦    I miss working every single day.  I miss feeling useful.  I miss having a sense of purpose.  I miss taking care of patients.  And, I even miss the idiots 😉