Suicide Attempt: Those Who Knew Never Asked…

…why I attempted suicide in September 1982.  I later found out that it was a big secret from  family (or close friends) who seemed like they’d be obvious to inform (as in why I’d suddenly dropped off the face of the earth and was no longer at the University of Illinois, Urbana-Champaign campus).  And, for the most part, it seemed  like nobody really gave a rats tail.  I did have an uncle who had visited me at the psych hospital the semester before, God bless him.  He wasn’t afraid to see whether or not I was drooling in a corner somewhere (I wasn’t – in fact, back in those days, I was downright intact compared to many there, and it was a private facility in the days where  you either went to a state hospital – like ‘One Flew Over the Cuckoo’s Nest’- or to a private facility that was essentially a hotel with nurses and a lot of pills; there were no ‘treatment centers’).  There was the friend of another uncle who befriended me (strange situation).  But that was the extent of asking me WHY I was there.  My parents were the most silent.  Nobody ever asked me why I’d tried to end my own life.

That seems a bit odd. Maybe it was some sort of bizarre form of ‘manners’ to not ask.  But if there’s ever a scream from a mountain top that someone needs to say something about SOMETHING, it’s a premature, unnatural attempt to die. During that time, my mom was going through radiation, post-mastectomy, and I’d been dropped off at school a week early to accommodate her radiation schedule (I was fine with being at school early- though the dorms were kind of spooky without everybody there- there were about 10 of us in a 12-story dorm).  I don’t remember dealing with my mom’s cancer at all. I’d been in such a rush to ‘look normal’ after having to leave school the semester earlier… I know I’d never have wanted to ’cause trouble’.

Looking back, I’m not sure I know all of the reasons for the overdose, and only remember the first part of it when I mechanically took sleeping pills one after another with the only conscious thought being how much I just wanted some rest.  I don’t remember any actual ‘death wish’. I  ‘just’ wanted relief from so much pressure of being back on that campus after being ‘removed’ the semester before because of deteriorating anorexia, bulimia, and depression with a suicide ‘plan’ (that was pretty dang lethal).  I was trying SO hard to ‘look OK’, and that pressure was unbelievable. SO when I started taking those sleeping pills, one after another, I was only wanting relief from the pressure. I had intended to wake up, from what I remember. When I woke up after nearly 3 days in a coma, I was confused.  I also didn’t believe that they’d found the remnants of fifty antidepressant tablets when they pumped my stomach.  I don’t remember that at all. I eventually sent for the hospital and university health center records.  I needed gaps filled in.

I also wrote to my roommate years later, who told me that I’d been out at a local bar (underage), and came back to the room drunk before dinner. She hadn’t seen me actually take the sleeping pills (I do remember her being in the room, but I was sitting at my desk, my back to her; being drunk explains the impulsivity and lack of planning for consequences of my actions- and why the drugs ‘took’ so intensely). But she said I went to sleep and didn’t get up the next morning. She said I’d mumbled something about not going to class because I was so tired. When she got back late that afternoon, I was still out of it, and she couldn’t wake me up. At all.  She got one of my floor-mates from the last semester who knew me better, and she looked at me and called the ambulance (about 24 hours after taking the pills…it’s amazing that I survived that long). I was taken to the university health clinic, who sent me on to a regular medical hospital/trauma center with a blood pressure that was nearly meeting in the middle. (Not good).

In looking at the records, my ‘coma scale’ couldn’t go any lower. I responded to nothing. Zip.  And, understandably- but frighteningly, I remember none of that. I don’t know when I took the bottle of antidepressants.  I don’t remember having my stomach pumped (and used to get so uneasy later in my nursing career when OD patients were often ‘threatened’ with having their stomachs pumped as some sort of punishment; they were seen as deliberately causing unpleasant work for the ER staff who had ‘real’ patients to take care of- those who hadn’t put themselves in that position- never mind that the person was in so much emotional pain that they felt they had no other options).  I never told anybody that I planned to overdose. I don’t think I knew I would OD.   I’d been trying to fit in and be social (not something that came easily outside of my home church group setting). I wanted to be in school.

I do remember asking the nurse in ICU what I had been wearing when I was brought in, as that would tell me what day it had been. I’d been brought in on a Wednesday.  I had been wearing a red gingham shirt and overalls- I did remember putting those on on Tuesday- brought to the ER on Wednesday.  I probably looked like a dead farmer.  I was very close to not making it.  I sent for my medical records years later, and my vital signs were very bad- as in not much difference between the top and bottom numbers of my blood pressure, a heart arrhythmia, and very slow respirations.  I was given some resuscitative drugs to maintain my heart rhythm, and fluids to maintain my blood pressure, and over a few days, I woke up.  Freaked. Out.

My first recollection is of someone moving an oxygen mask to ask me a question, so they could see me talking.  Then fade to black again.  Then, I clearly remember a nurse going towards my crotch with a syringe (no explanation that she was removing the catheter). I’d never been in a real medical hospital before. From there on, it was a bunch of blips of memory, finally getting back to a ‘slow’ normal. I remember being very confused by the Saturday cartoons.  I’d been propped up in a chair with the cartoons on (at age 18?), and it was hard to follow them. Bugs Bunny was too ‘deep’. For a while, there was concern about permanent brain damage, and the psychiatrist I went back to was surprised I wasn’t impaired.  I also remember the charcoal diarrhea… I didn’t know the ‘rules’ in ICU about not disconnecting the EKG leads without help before getting out of bed ( I didn’t want to bother anybody), so it would look like I’d flatlined when I was just in a hurry to get to the bathroom.  They didn’t like that very much. I felt the bruising on my breastbone where I’d been ‘knuckle-rubbed’ to wake me up, and the scratchy feeling in my throat where tubes had been.  And it all confused me.

While I don’t remember a lot about the overall overdose, I do know I didn’t want to leave school! I wanted to do well !  I wanted to show my friends that I was OK ! (And with that, I had some desert property in the Everglades for anybody who was on board with that idea). I didn’t want to be a failure.  I have to admit, that at 18 years old, in an ICU room in Urbana, IL, I had a serious meltdown when I was told I’d be sent back to the nut farm I’d spent February through mid-April earlier that same year.  My parents had been called (that was like ramming a dagger into my heart- how could they call them? I especially didn’t want to disappoint them… but  how could they NOT call them?  I was a huge liability at that point). Everything was falling apart.  I was hysterically crying when I saw my mom and dad show up later that day (?Sunday- no cartoons, and mom had to be at radiation on Monday) after clearing out my dorm room and selling my books back to the bookstore– for some reason, losing those books was almost like the ultimate ‘proof’ that nobody believed in me… I’d been ‘removed’ from school. Again.  For weeks, I cried about that.

My therapist from the previous and current semester had been called in (she was recovering from a blood clot in her leg, and having a semi-miserable first months of pregnancy).  She explained that there were no other choices.  I couldn’t remember the overdose- that was almost worse than planning it out.  They couldn’t ensure my safety. Forest Hospital in Des Plaines, IL had already been notified, and since I was as medically stable as I was going to get, I was being discharged from the ICU to be driven back up to the suburbs of Chicago.  I was devastated.  I was horribly ashamed.  I’d failed. Again.  I didn’t see the ‘illness’ part of what was going on. I just saw failure.

It was almost a bit of a relief to be around people who knew me, who didn’t think I was a lost cause (though the next several months- September 1982 through early January 1983 weren’t exactly smooth at the hospital… I was a train wreck, and things got worse before they got better, in the days of endless insurance days inpatient; ‘losing’ school was absolutely devastating, and stirred up a lot).  I spent a total of 7 months in the hospital over 2 admissions.  I was tested (I’m reasonably intelligent, so they said- LOL) from one end to another, and I tested them. I’d always been pathologically well-behaved (confirmed years later by my folks), and at the nut farm, I blew through some rules.  I also tried to escape (going where?) and hurdled the gardner and his wheelbarrow only to collapse on the sidewalk about 1/2 a block from the hospital, in full view of a busy road…. nice to have that on my resumé. *rolling eyes*  At any rate, I was in a place to work on whatever was the immediate problem, which was making sure I didn’t blindly go on some life-ending rampage.  I was never a ‘danger to others’… it was always ‘danger to self’.  I’d give the shirt off my back to ‘others’.   Whatever had happened in that dorm room in Urbana couldn’t happen again.

In some ways I don’t know if I’ll ever know what was going through my ethanol laced brain that Tuesday afternoon when I started eating sleeping pills.  Maybe the booze was a huge part of that horrendous time.  It does explain a lot- but there had to be enough going on to ‘set up’ what happened.  What I did.  The memory loss has always been really hard to deal with. There are days that are just ‘gone’.  No matter how hard I try to figure it out, it’s just not there.  But I always wondered why nobody asked me if I’d really wanted to die.  The answer is no.

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Being a Nurse Family Member…

Most nurses know that the worst family members of patients are doctors, lawyers, and other nurses!  We know what to look for. We know what is standard operating procedure. We know what is correct technique. We know what the alarms and numbers mean. We know how things are supposed to be done…and we don’t want crap care for our families.  When my dad had surgery recently, I saw some things that I wasn’t happy about- but not close enough to see what was going on at the time, or had taken a break to go take care of my dog, so not there at all.  I’d hear when I got back to the hospital.

Dad returned from surgery to spend 24 hours in ICU for observation since the surgery was on his neck, with a lot of real estate in there that needed to be closely monitored. One of his blood vessels had to be cut in order to remove a mass, and then sutured shut, and it was critical that he be monitored for any signs of that vessel leaking.  It could be fatal- or life-altering- if it ‘blew’.  I had to wait until he got settled until I could see him in ICU- very understandable that they had to get him hooked up and an initial assessment done. Seems his nurse forgot about his family and close friend in the waiting room for nearly an hour and a half.  I finally asked if it was OK to see him, only to see his nurse sitting at the desk at the end of the hall. She said , “Oh, yeah, come on back”, as if we had just shown up.  We’d been in the hall when he was brought into the unit, and told they’d come and get us.  That nurse was there.

I initially stayed in the ICU room for only a few minutes, since dad was still sleeping most of the time, and the numbers on the monitor were stable.  I stepped out into the waiting room again with his friend, and we talked.  I needed to run home and give my dog her medicine, and then came back up to the hospital.  When I got there, dad’s IV fluids had been turned off. He hadn’t peed yet, and wasn’t taking enough fluids to compensate.  When he got some IV nausea meds (preventing vomiting was very important to protect that sutured blood vessel), he said it hurt.  There was no saline flush first- just straight to the nausea meds.  He was told that meds sometimes hurt (which is true- BUT, the site and patency of the site must be checked).  Basically, he was blown off. Then, after the medication, the saline flush was the bare minimum to maybe clear the extension tubing (5-6 inch tubing that makes it easier to reconnect IV antibiotics and give IV meds).  The nurses were ALL very nice. That wasn’t an issue. But youth and the inexperience that goes with it (simply because there isn’t the time yet to  gain the experience) aren’t always useful.  It’s not always because someone is ‘still out of it’ from anesthesia.  They still feel pain in IVs- and dad was plenty aware when the meds were given.  More than one nurse did this. When he got to a room (more on that later) the first thing the ‘old timer’ RN did was assess the IV site when he flinched a bit, and said that isn’t right; she changed the site, and dad had no more problems with the nausea meds or the antibiotics that had been leaking into his hand.

When dad was transferred to a room, I was again taking care of the dog’s meds (took me about an hour in the afternoon/early evening to do this) during the actual transfer. I knew he was going to a room, and was fine with that- he was ready.  He had been up in the chair and done well, and walked one time to the end of the ICU hall (about 6 rooms) and back. When I got back, and found his new room, I was told that the nurse loaded up his stuff to carry, his friend had carried some stuff, and dad was left to walk with no support (or WHEELCHAIR) to a room on another part of the same floor.  It was a considerable distance away from his ICU bed. It was the second time he walked at all, and a few hours after he’d even been out of bed at all.  His friend told him to hold on to her arm, at which time the nurse offered her arm- but if he had started to lose  his balance,  nobody (the NURSE) would have had any sort of grip on him. His elderly friend certainly wasn’t responsible for his safety.  I was mad when I heard that. He could walk when he got to the other room- NOT as a means to transfer him there. That is incredibly stupid from a safety standpoint.

Dad had eaten a bowl of soup a while before ‘tranferring’ himself to the new room.  That was the first food in 36 hours besides sips of diet soda.  Since his IV fluids had been axed before he was taking adequate fluids, he was ‘low’ on fluids. His heart rate was OK, and his blood pressure was actually a bit up for him (the dinging and gongs in ICU drove him nuts- he is VERY sensitive to auditory stim….gum chewers in the same area will actually drive his BP up to stroke level)…so I guess from looking at the numbers alone (and not the actual patient), he may have looked hemodynamically stable….but people still need fluids !!  Orthostatic changes don’t always happen in the first minute; he could have easily dropped his pressure en route to the new room from being ‘dry’.

The nurses on the regular ‘floor’ were outstanding.  Both of the ones he had were personable and very attentive to the things that may not seem ‘worth’ the time of an ICU nurse- but can make a huge difference in how care is perceived.  I’ve been an RN for nearly 28 years.  Granted, I’ve been on disability for 8.5 years- but during that time I’ve been IN the hospital a LOT.  I still know the routine procedures and when an IV needs to be assessed more closely.   IV meds aren’t given without a saline flush (and assessment of the IV itself) first.  I’ve spent time around monitors and floated to several types of ICU (including NICU).  That’s only part of the picture.  Someone can have great ‘numbers’ but still have things wrong!

Nurses must listen to the patient, and if a patient is complaining about an IV site hurting when anything is pushed into them, they need to be changed (or at least addressed in some way besides some lame ‘oh, some meds do that’ comment- without looking at it). Sure- meds can be pushed through just about anything…doesn’t mean the vein and IV are intact.  Many of the patients in that ICU were on vents and not communicative- maybe the nurses just got used to dealing with overt, objective issues. Maybe the transferring of someone who could walk seemed OK since most of their patients don’t walk at all.  That goes back to inexperience (and some lack of common sense of youth- and known policies re: transfers).

An elderly patient one day after major surgery with no supportive fluids, or consistent food intake is not a candidate for walking throughout the hospital to a new room, or ignored when they say the IV site hurts. 

There are many good young nurses- but ALL nurses (no matter how many decades they have worked) must always be open to learning.  The young ones need mentors during their first several years- especially in a critical care setting.  IV fluids need to run until the patient is taking in enough oral fluids to equal the rate of the IV, and at LEAST until they pee (providing there aren’t any issues with fluid overload or kidney function; my dad had neither of those).  As a patient myself, I saw why it’s no wonder these younger nurses aren’t doing the basics. As students, they weren’t allowed to do anything but follow an experienced (sometimes still relatively new) nurse during clinicals.  When I graduated, if we didn’t DO the skills, we didn’t graduate (never got to take boards). Period.  There is a huge gap between book knowledge and practical knowledge that is only getting worse.

All of the nurses dad had were so very kind and sweet. That wasn’t a problem at all… but some of the decision making reminded me of my very first semester of nursing school, with trying to get the basic skills learned.  Press Ganey will hear about this.  But this hospital’s ER satisfaction is a ratty %83 per the hospital’s own information anyway. That’s up from the %65 from a few years ago.  The floor and ICU numbers were better, but in ICU I wonder if it’s because their patients often can’t reply or respond to satisfaction surveys and their family members don’t know what is responsible care in specific situations. ?   With healthcare becoming a concierge (hotel-like) industry with these stupid surveys, the nurses focus on the sweet and kind, and less on the technical prowess needed with the sicker patients.  Dad was relatively easy for ICU standards- but he could communicate with them. And they didn’t listen.

When Dad Had Surgery

Those who have read my blogs know that my family is no stranger to various cancers and health issues.  My mom had bilateral mastectomies (separate surgeries), a lung resection, and brain tumor removed- all cancer. She also had chemotherapy and radiation. I’m a medical train wreck, including leukemia (APL/ AML- sub-type M3), diabetes, dysautonomia, multiple pulmonary emboli (all three lobes- acute, subacute, and chronic -all found at the same time), lung scarring, seizures, multiple concussions, yadda, yadda, yadda…  My dad has been the rock for both of us (mom died in 2003, after being 17 years free of cancer, but with 10 years of dementia caused by the radiation to her brain; she died from sepsis- not cancer).  Dad is the one who takes care of my beloved schnauzer when I’ve been in the hospital.  He didn’t own a bottle of Tylenol until a month ago.

Dad had to go to the doctor for an annual look-see before getting his year of thyroid pills refilled. The doc poked and prodded on his neck, as per usual, and felt ‘something’. He decided he wanted to get an ultrasound to figure out what the hard pea-sized ‘thing’ actually was.  Dad got scanned (I had to reassure him that it was painless and very quick), and instead they found a large (2 x 1.5 x 1.5 inch) mass coming up from the right side of his thyroid.  That’s BIG for the neck area- there are a lot of veins, nerves, arteries, muscle, windpipe, and esophagus related structures in there.  Now they wanted a biopsy.  Numb it up, take some needles and withdraw some of the tissue. They did that, and dad did well… the results, however, were inconclusive.  He was sent to a neck surgeon to figure out the next step.

The neck doc had seen the biopsy and ultrasound results, and felt that it was a cancer, but that it had actually replaced the actual thyroid tissue on the right side; the left side looked OK, at least from the tests.  The ENT surgeon (neck doc) decided to get a CT of the area to check for any lymph node involvement. He did feel that it was some sort of cancer, but reassured dad, and myself, that the vast majority of thyroid cancers are fixed with surgery. Dad should be fine.  But, in the meantime, they wanted to get some more biopsy material, to see if they could narrow down what was going on in there- but bottom line, the thing had to be removed.  It was too squirrelly to leave in there.

Dad is a guy who is 80 years old, and takes a lousy Synthroid pill every day. That’s it. He lives alone, runs around ALL over the place, has a social life that pretty well has him ‘booked’ every day with something, and has really never known anything about chronic or life-altering illness. He has been incredibly blessed.  He had a busted appendix in the early 80s- that was bad. But he got well. He had his gallbladder removed, and aside from post-op vomiting, he was good to go in a week.  He’s been remarkably healthy.  SO, all of this medical stuff that involved HIM was completely foreign.  Mom had numerous surgeries and became totally dependent on him during her last 10 years (he was amazing as he cared for her at home). I’m mostly independent, but when I’m in the hospital, he’s been the go-to guy to make sure my dog is OK, and my laundry gets done when I’m holed up. He has been really healthy.  This whole ‘being sick’ thing isn’t something he really knew what to do with.

While I know that I’m likely to outlive him, I hate even thinking about him not being here.  I have very few people around here that are very present in my life. I’ve got friends- mostly in Texas. The people I know here are mostly interacted with on FaceBook- most I haven’t seen in 30 years.  Dad is the person I talk to daily.  He’s the one who I know always has my back. I don’t have anyone else who could take care of a schnauzer in heart failure with medications (or who even knows her very well), or who I can call for just about anything.   I have some amazing and incredibly dear family scattered about… but dad is just a few minutes away. They are wonderful, yet my physical situation doesn’t make it possible for me to be all that mobile to see them all that much; I certainly feel that I’ve been too much on the ‘fringes’ to just call anyone.  Thinking that something could be wrong- and BAD wrong- with him was a lot to take in.  I have been going to MD appointments with him during this- partly because I want to be supportive, and partly because I’m an RN (disabled, but still have my license since I earned it, and it is MINE) and understand more of the medical terminology, so when we leave, I know how to answer his questions better.

The day for surgery finally came, and while a friend of his got him to the hospital, I definitely wanted to be there before he went into surgery. I wanted to talk to the anesthesiologist about his severe vomiting after getting Versed for other procedures (the anesthesiologist practically challenged me on that- said it wasn’t possible- must be the gasses used, even though it was the only common denominator the times dad had gotten sick- and a few times he hadn’t had ANY gas….time to back off when the doctor thinks he’s always right- wouldn’t help dad, and the doc wasn’t going to listen).   He ended up giving dad Versed, and sure enough, he was sick- though not nearly as badly as other times since they gave him more anti-nausea meds post-op.  Evidently, this type of surgery is more likely to cause a problem with nausea and vomiting because of one of the nerves in that area- which dad didn’t need to hear minutes before going into surgery.  He was already terrified.

They wheeled him off, and his friend and I began the wait.  It took about 3-3.5 hours for the actual surgery, then about 2 hours in recovery. After the surgery, the surgeon (who is wonderful) came out and talked to us.  The initial pathology report sounded potentially ominous. He thought it was a low grade lymphoma, and it might require chemotherapy. It wasn’t thyroid cancer. But until the final pathology reports were back in about 5 days, there wouldn’t be any more information than that.  No point in telling dad part of the story, so he could worry- we all planned to stick with ‘the final pathology reports aren’t back’ which was true, and kept him from spending days in terror thinking he was up against something terminal.  Nobody hears ‘cancer’ and their first thought is that it’s positive.  Since I’d been through extensive chemotherapy, my initial reaction was that he’d have that to deal with, even though most chemo isn’t a daily occurrence.  Most chemo is anywhere from every few months to a few times a week (until the time when pills are used daily for maintenance for a period of time).  I cried. I didn’t want that miserable existence for him…he was always on the go.  Having an indeterminate amount of time to deal with feeling lousy was no way to spend the precious years he has to live.  He’s no where close to slowing down.

Dad stayed in the hospital for 2 full days after surgery. More on that in another post.  He did  pretty well from a nursing standpoint, but from the perspective of a daughter, he had one rough day after surgery and was gradually improving, but it was still tough to see my active, never-holding-still dad lying in a bed, or sitting in very institutional furniture.  My dad who can graze his way through the day eating anything in sight was doing well to get a diet Sierra Mist down.  This is a guy who likes to eat!  He was nauseated most of the time (but can’t be the Versed!).

We got to the appointment to hear the final pathology report…more anticipatory tension.  We ended up getting some relatively wonderful news- yes, it’s a low grade cancer, and he’ll need scans to check the rest of his body for other masses- which may or may not have to be removed, depending on if they were causing trouble.  The mass was well-encapsulated, so not just spreading willy-nilly in his neck.  Also great news. The surgeon thought it had been there for 5-10 years, it’s that slow growing. He’ll be seeing an oncologist after the scans to find out what was next (come to find out, he’ll be seeing my oncologist, so I could reassure dad that he’s a good guy).  I got some label for what the description of the mass was, but when I looked up the words online, it was more confusing than helpful; will wait to ask the oncologist 🙂

Dad is going to be OK.  The doc said that this kind of cancer won’t kill dad. It’s quite probable that he’s going to have another 10 years of quality living.  That is a huge answer to prayer.  Yes, one day dad will die. But thankfully, it won’t be anytime soon. ❤

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.

Yo, Doc…I Don’t Worship You

I went to see a surgeon about getting rid of some cysts that I get on my scalp. I wait until I have a ‘crop’ of them before bothering with them, but eventually they do get infected, so I prefer that they are gone.  This isn’t anything new. I hadn’t anticipated any problems.  This same surgeon had inserted and removed my Hickman catheter for chemotherapy. He’d been pretty decent to deal with.

So,  I go to the appointment, and he’s deciding what he wants to do, and we both agree that doing it under a local anesthetic would be fine. I’d prefer to not get knocked out; anesthesia doesn’t sit well with me and I’ve had some nasty complications.  Then he tells me he’s going to do it in a small town about 15 miles from here. There are three good sized hospitals (250-350 beds) and an ambulatory surgery center here in town. In the little town, they have a ‘branch’ hospital of one of the larger hospitals. If something unexpected happens, I’m either stuck in that dinky hospital, or I’ve got to be transferred.  And why should I have to go out of town to a smaller place?  The nurse said that the doc thinks it’s quieter over there. Really?  I’m being inconvenienced for his convenience?  I didn’t see him walk on water. I’m not impressed. I think he may live there, and it would let him sleep in later instead of driving here early in the morning. But that’s pure speculation.

Then I tell him that the driving distance is an issue. So he tells me that I’d have to have someone drive me here in town even for a local anesthetic, so just find someone. At that point I hadn’t brought my dad into the picture (the one who does the driving in these situations).  I am always within a cab ride or bus ride away from home no matter where I go for medical stuff; I always want a backup plan even if dad is going to drive me. There is no bus between that little town and home, and a cab would be more expensive than the surgery.  I told the doc I don’t have anybody to ask, and he insists that I can come up with someone. I told him I’d have to ‘rent’ someone (which will be the case when the time comes that my dad isn’t available).

That made me mad. When I say that I don’t have a lineup of people to drag me through two counties, I mean it  (well, dad is willing to take me there, but that wasn’t the point).  Not everybody has a list of people who will be available to help them at the drop of a hat.  Not everybody has friends that they’re in contact with regularly- or even in the same state.  I’ve got one friend here who just had some significant complications after one surgery, that required another surgery, and she’s still recovering. She also has a toddler, and works part time when she’s not recovering from surgeries. We’ve talked, and had FaceBook contact, but I haven’t seen her for 27 years. I know she’d help if she could.  I know a very few other people who also work, and I haven’t seen them since 1985 either; it’s all FaceBook contact. 

I don’t go out of my way to be difficult, and I’m not obligated to go into every reason why I want something done closer to home. If that little town had some medical center of the universe, I might think differently (but probably not for some stupid scalp cysts), but it doesn’t. To me, it’s like ‘The Podunk Urgent Care and Taxidermy Shop’…not really fair, since it’s associated with a good hospital (actually my preferred facility IN TOWN). I have to have the local anesthetic without epinephrine, which will increase blood loss- but the epinephrine would make the dysautonomia go crazy, and there’s a considerable risk of ending up in ICU. I’m not just being stubborn. I need to be closer to home, in a decent sized facility, or even the ambulatory care center, where they deal with emergency transfers if needed.  Then I got to thinking that maybe something was wrong with the doc being banned from the hospitals here, but the info online didn’t show any problems.  It was purely for his convenience or preference.  Yeah, well buddy? I’ve got some preferences as well, that revolve around safety and getting this done without any medical mayhem happening because of being somewhere that isn’t as equipped to deal with blood loss and/or the dysautonomia. And yes, he knows about the dysautonomia.

So, I got the call from the nurse at his office thinking she’s going to schedule the procedure out there in the back forty, and I told her I’m not going to be going there. She then asks “So I should cancel it?”, and my unpleasant, sarcastic self is thinking, ‘Why no ! Let’s just let him show up to NOBODY, and he can see my list of people who can drag me around the state -right there in front of him’. But I was nice. Sorta. I just said that would be fine. End of conversation.

I’ll see my regular doc on Monday, and ask her for a referral to someone who doesn’t do cross-country surgery. I’m sure there are plenty to choose from. And dad will be happy to lug me around here in town whenever it’s scheduled. 🙂

The Violence of A Second Chance: CPR and Resuscitation

When someone ‘codes’ on TV, everything is over and done with before the next commercial break.  In real life, it’s a horrendous process that generally creates more problems than it was supposed to fix. When I worked in hospitals or doing admissions at a nursing home, I often had to explain what goes on; people just aren’t familiar with what CPR does and doesn’t do.  There isn’t a good place to go for information in ‘real life’ terms.  People really don’t have the information to make informed decisions. That bothers me as a nurse.  The following may be more than some people want to know. But I’m throwing out what I’ve witnessed and learned since becoming an RN in 1985.

CPR was developed by a guy in Norway after witnessing the drowning of a young person (I believe under 20 years old) who was otherwise healthy. That was the original intended demographic for whom CPR was developed- and it’s still the group with the best outcomes.  The main cause for infants and children to need CPR is respiratory failure- which is usually easier to fix than when the heart stops for other reasons.  For most adults, CPR is needed for cardiac (heart) reasons, and the survival rate – and return to previous level of functioning– is %5 at best. For the others, either it doesn’t help at all, or the person is left in a vegetative state for years, requiring long term care in an institution.  Nobody talks about that.

When CPR is done correctly, it can fracture ribs, puncture lungs, lacerate the liver, and still lead to brain damage or death.  When someone is pumping on someone’s chest, the pressure has to be enough to move blood in an immobile circulatory system (blood vessels and heart). That pressure can also cause cells to rupture under the pressure, leading to stroke-like brain damage. People get out of being criminally assaulted with less damage. But, it’s the only way to have a second chance for someone whose heart has stopped.

With the newer ‘compression-only’ CPR (no rescue breathing, like before), there isn’t the same amount of oxygen being circulated. That’s a problem in my humble nursey opinion- but it’s the new standard being taught.  In a hospital setting, or when EMS arrives in an out-of-hospital setting, they generally ‘intubate’ someone immediately (put a tube into the person’s windpipe) and hook them up to oxygen so it can get to their lungs, which will send oxygenated blood to the body with each ‘pump’ or compression of CPR.  Oxygen can only help CPR.

If someone is ‘brought back’ (meaning there’s a heartbeat- nothing else- that is THE criteria for ‘successful’ resuscitation- CPR is no longer needed), they are taken to ICU on a ventilator, and time starts ticking. Now, with the induced hypothermia being done (purposeful cooling of the body to minimize the oxygen demands, thus reducing brain damage, and has its own set of risks), outcomes CAN be better- but that is generally associated with someone who was relatively healthy before their heart stopped. The older someone is, and the sicker they were when their heart stopped, the worse the prognosis.  That’s just the truth.  CPR is not any sort of guarantee even when it all goes perfectly.  It’s a last ditch attempt to save someone’s life. And sometimes there is nothing that will save them, or return them to their previous state of health.  But in 2012, it’s all we’ve got.

When someone is warmed up again after they’ve been ‘cooled’, blood vessels dilate- which can add to the brain swelling that happens with oxygen deprivation of any duration. The dilation is the body’s attempt to make more oxygenated blood available to the brain and heart- but it can become part of what ends up being lethal.  Yet, it often makes sense to at least try to resuscitate someone. Nobody knows who will have a good outcome- there are just general statistics. And, not to make some sort of attempt for someone who may have ‘a chance’ usually doesn’t make any sense. People want to live- though most also want to be well enough to have some sort of life. Others want to be kept alive no matter what. There really isn’t a right or wrong choice- it’s all very personal, though most people I’ve talked to as a nurse don’t want to be “on machines” or dependent in a nursing home.

When someone has multiple medical issues and/or is older, the chances of CPR bringing them back to their previous quality of life are dismal.  When I was diagnosed with leukemia in late March 2010, my blood work and overall condition were such that the nurse I saw the most on the day shift came in and had ‘the talk’ with me. She wanted to find out what I wanted done should things get really dicey.  That was tough. I knew the statistics, and I knew that I wasn’t healthy to start with before the leukemia diagnosis. But I was 46 years old…I wasn’t ready to die if there was some way to avoid it.  I had (and have) a durable power of attorney for healthcare and a living will. I hadn’t planned on having to talk about it- I always figured that if that stuff was needed, I’d already be out cold.  But, I had to make decisions. I opted to be resuscitated if it became necessary- but if things looked grim afterwards, and the quality of life was going to be one of dependence and needing an institution to maintain me, I wanted to have the plug pulled. No camping in a bed for the rest of my ‘life’, not knowing what was going on.  I stayed a ‘full code’, but with conditions for afterwards.

I also knew that being taken off of life support doesn’t always mean someone dies. Most of the time, the testing done to determine brain activity will be accurate regarding the ability to breathe once the ventilator is turned off. But some people do have enough reflex activity that they do keep breathing. The reflexes can seem very intentional, but they are just the brain doing its job on autopilot. It can be very difficult for families to see those reflexes and think that the doctors are wrong about their loved one not having any future.  Some reflexes seem very purposeful during the time after CPR, even when still on life support. It can all seem very confusing.

During that time I was initially in the hospital for the leukemia, I also had to think about the possibility of needing end of life care, or hospice.  If things got to the point where medical science could no longer help me, I wanted comfort care only.  Just make sure I didn’t hurt, and let me go home to my dog.  In that case, I would have been a ‘no code’. Hospice generally won’t take someone who is still opting to be resuscitated. Their purpose is to help people through the dying process with comfort and dignity, and support their families and friends. They are a wonderful resource for those who no longer have options for recovery.

Anyone can make very specific decisions and have them listed in a living will. It’s also best to have someone (or more than one person) designated as a durable power of attorney for health care.  That is NOT the same as a regular durable power of attorney. A ‘POA’ is for financial decisions if you can’t make them.  A DPOAH is for health care decisions  if you can’t make them for yourself.  As long as you are capable of making decisions, the DPOAH is NOT in effect. If you become incapable of making decisions, that is when someone else would legally be allowed to do so.  There are other names for the healthcare POA- healthcare proxy, etc. depending on the state (USA).  In my opinion, everyone should have both a living will and a power of attorney for healthcare (and the third ‘regular’ power of attorney for financial decisions). Otherwise, the doctors are left with what the family guesses you want. If nobody is around, they have to keep you alive until the point comes where two doctors will legally sign documents stating that you are beyond hope, nobody is coming forward to help with decisions, and you are then taken off of life support.

For any ‘no code’,  DNR (Do Not Resuscitate), No CPR, etc, a physician MUST write an order in the chart- otherwise the nurses/healthcare staff MUST begin CPR and resuscitation measures. They are legally bound to do so- even if your family members are standing there telling them to stop. There has to be a legal order in the chart. Having your wishes known is so incredibly important, so that they are carried out.

Talk to your own family about what you want done. Tell your doctor, and get the living will and power of attorney for healthcare/healthcare proxy signed, witnessed, and put into your medical record (your doc’s office and your preferred hospital). Give copies to all people named as your decision makers.  Don’t leave things up to someone else to decide.  It’s a horrible process for them to watch you deteriorating, and if they know what you want, it helps them not feel like they’re giving up on you.

Exit Stage Vertical

Yesterday , Mary Kay Meeker left this earth from an ICU bed at a hospital in Waukesha, WI (USA).   Mary Kay’s hand was taken by her husband, and placed in the hand of God as she took her last breath after being taken off life support.  In that moment, she saw glory and a complete healing of her recent critical medical issues, and the residual effects of polio that she had as a young child. She was released from the stranglehold of sickness into the absolute freedom and peace of God’s love.  With that new health and perfection of her heavenly body, she saw Jesus for the first time, and began her exploration of eternity.  She saw our Lord !  She has spoken to Jesus face to face, and seen Him as He is !  Mary Kay is now part of eternity.

While people here will miss her presence, there are so many stories about Mary Kay that are surfacing to help soothe the wound of her absence. This is a woman who never met someone she couldn’t encourage or build up in some way.  Whether it be through her work in programming at Timber-lee Christian Center, or Awana groups, her church, or as a neighbor or friend, Mary Kay was all about the glass being half full, if not overflowing.

I often saw her on stage when I first met Mary Kay as a camper.  She was doing skits and ventriloquism acts during week long sessions, that continued all summer long.  She made those skits vehicles for how to live as a Christian. Even for elementary school kids, there was something about her that was ‘real’…and she liked kids. There have been numerous accounts of how she and her husband Greg would interact with kids in a way that let them know that being a kid was good enough.  Kids crave being valued by adults.

Mary Kay was an amazing pianist.  Even with her left arm being weakened by polio, she could crank out just about any song in any key at the drop of a hat.  Her ear for music was amazing.  I never saw her play the piano without a big smile while she simultaneously led 300+ campers in various camp songs from that stage in Cross Timber.  Music was a big part of who Mary Kay was.

It is hard to imagine Timber-lee without Mary Kay.  Oh, I know it will continue to be an amazing Christian camp, with so many activities and options for kids. It will still show the love of Jesus to kids of all ages. It will still be a great place for a winter retreat or group meeting.  But one of its core members is gone.  That will hurt, and yet those who know her know that she would want things to go on as scheduled, and for people to keep reaching past what they think they can do- to spread the love of Jesus to everyone who walks along Timber-lee’s paths.

Mary Kay was all about showing people possibilities they hadn’t even considered.  She boosted the good in people, and loved those who were going through not such great times- sometimes when she didn’t even know it.  Her influence didn’t require direct conversation (though she did talk with a lot of people about a lot of things, and really listened).  She lived her life in such a way as to show people ways of relating to each other, and to God. Even when I hadn’t seen her for years, I’d remember something about MK and be encouraged. She was a ‘feel good’ person.

Those of us who are Christians will see her again someday, and know the awe and wonder of seeing Jesus for the first time.  In the meantime, Mary Kay is probably setting up various choirs and singing groups, and seeking out those who always wanted to sing but didn’t think they could when they were alive on earth.  Maybe she’s organizing the angels’ choir into soprano, alto, tenor, and bass sections , and using that new left arm to direct them in some camp songs !! She has probably already met George Beverly Shea and the Goodmans, and has them helping with the choirs !

I can see Mary Kay walking through Heaven, gathering orphaned kids and talking to each of them- praising God for each of them.  She’ll have them singing or doing skits before long, to entertain the other folks up in Heaven. 🙂  If nobody stops her, she’ll have them doing something in Swedish (the Swedes up there will LOVE Mary Kay- yah, you betcha !!).   I can see her being welcomed by former Timber-lee folks who have been up there for a while, and them introducing her to people they know.

Mary Kay’s work here is done, at least directly- she planted countless seeds that will continue to grow.  It was God’s will that she be in Heaven with Him… she may not be working here on earth, but I’m guessing she’s keeping plenty busy.  I can’t imagine her having it any other way !