From Person to Patient

Robin
Rocky Mountain Stroke Survivor

February 9, 2013

I felt really out of place as I walked into the emergency room.  The only other time I’ve walked into an ER waiting room from that direction was when Hubby had appendicitis in the middle of the night and we walked into the deserted small town hospital where I was just starting my residency.  (To give you an idea of how small, we had three labor rooms and only two labor and delivery nurses on at a time.)  That time was easy.  I’d told them he had appendicitis, they had him in surgery within a couple hours.  This time, I felt a little silly.  I looked perfectly fine.  I felt fine, mostly.  Just dizzy and uncoordinated.  But not like someone who belonged in an emergency room.

“What is your emergency?” the triage nurse asked me.

“Um.  I’m having some neurological deficits,” I replied.  ”I guess I could be having a stroke.”  Thankfully, one of my partners had called ahead and they were expecting me.

The young triage nurse bumped me ahead of a room full of people wearing masks who had already been triaged and found to be stable.  ”I know you don’t meet any of our criteria for a stroke alert,” he said, “but I had a stroke last year and went a couple weeks without being evaluated.  I know it can happen.”  He looked to be about my age and I felt strangely reassured.

Knowing I was a physician, the triage nurse and his sidekick treated me as a compatriot, another medical person.  And then the first step towards being a patient happened: I and all my stuff were piled into a wheelchair and I was wheeled back into the emergency room.  I learned why it is patients don’t know their way around hospitals very well.  From then until I walked out on my own two feet, I was “transported” everywhere they wanted me to go.  For some reason, it’s very hard to get your bearings when you’re being wheeled around in a wheelchair or bed.

I sat in my ER bed in my little ER cubbyhole and read the only book I had along, Injection Techniques in Orthopedics and Sports Medicine.  I have always used it as a reference and it was kind of interesting to read it cover to cover.  Several times, I wandered around the ER looking for an empty bathroom.  A series of people came through.  My nurse.  A resident.  My new nurse when the shift changed.  The ER doctor overseeing the resident.  Everyone did a cursory neurological examination.  Everyone missed my deficits.  I’d show them and they say, “Oh, huh….”  I was told that I was having an MRI with gadolinium instead of a CT because the MRI was more sensitive.  Since that’s what my partner had called and requested hours before, I wasn’t surprised.

Hubby kept the kids at home at my request because I could be taken for MRI at any moment and would be gone from the ER for awhile.  Finally I told them to come since the MRI kept getting pushed later and later.  They arrived around dusk, just moments after I was wheeled away for the MRI.  I should have had them come several hours before; I’ll bet my MRI would have been sooner.

The MRI was loud.  Really loud.  The kind of loud of a parade or a concert.  The loud you feel rather than hear.  I’m sure the earplugs helped but the clangs and tones shot through me. I was reminded of IT in A Wrinkle in Time.  I remembered that Meg had recited the periodic table of the elements to fight the relentless rhythm of IT…I gave in and started counting and looking for patterns.  Six clangs, seven tones, seven clangs, seven tones, six clangs, seven tones, seven clangs, seven tones…found the pattern!  Before he gave me back my glasses, the MRI tech let me look at my MRI.  He pointed out my nose and eyeballs and how weird they looked.  I chattily agreed and carefully watched the right cerebellum as it flashed past.  Yup.  Something was there.  Several somethings.  It would be up to the radiologist to say what.

I was wheeled back to my ER cubby to find my family waiting for me.  Little Sister demanded to be nursed while Big Brother hung back shyly.  ”It’s really strange seeing Mama sitting on a bed in a hospital, isn’t it?” I asked.

“Meow,” he replied.  He often hides in his role as Baxter the Kitty Cat when he finds himself in an uncomfortable situation.

“Would Baxter like to hop up here next to me?” I asked.  With a little coaxing, he consented.  I soon found how hard it is to cuddle with kids with a heplock (IV with no fluids running).  Little Sister fidgeted with it and Big Brother headbutted it while scrambling on me.

After hours of boredom and being left pretty much to my own devices, I suddenly had a whole parade of medical people file in.  The ER doctor followed by the resident followed by two nurses (one I knew and one who turned out to be the one who would register me as an inpatient).  The cubby was very crowded with my hubby and I, two kids, and four medical people.

The ER doctor sat down on the stool near the head of my bed, where I was sitting cross-legged with Baxter the Kitty Cat in my lap.  Hubby sat at the foot with Little Sister.

The ER doc asked what I’d been doing while waiting.  I pointed at the book and explained I had a joint injection the next day that I hadn’t done before and so happened to have it along.  He looked incredulous.  ”You’re sitting here unable to touch your nose and you’re still preparing to do a joint injection tomorrow?  That takes guts.”  Then he looked grave.  ”I’m really sorry to have to tell you this.  There’s really no easy way…”  I recognized those words.  We’re trained to always warn someone before we tell them bad news.  It’s supposed to be easier that way.  From the patient perspective, I think it just makes you tune out everything else, stop breathing, and forget to listen to what comes next.  Then I realized he was saying, “infarcts.”  Infarcts.  That’s doctor-talk for stroke.  Why didn’t he just say stroke?  I guess infarct sounds better.  Who wants to tell a 31 year old women with kids crawling all over her that she had a stroke?

Hubby and I were actually relieved.  We’d talked about this already and knew I may have had a stroke.  I’m not a radiologist, though, so when I saw several small spots, I wasn’t sure if it could maybe be something else, something like MS.  MS is progressive and I’d be facing a lifetime of medical surprises.  What would it effect next?  A stroke, well, what’s done is done and so long as you don’t have another one, you can focus on recovering.  Of course, there was the question of why I had a stroke, but for the moment we just felt relieved that we knew what it was and could start working on getting better.

I asked when I could do the joint injection.  The doctor shook his head and laughed in that kind, regretful way I’ve laughed myself…at a joke that’s not funny because the fact is, someone has had a major medical setback.

The rest of my evening would be filled with more testing and getting settled in for the night.  We called my sister to come help with the kids.  We decided I’d better make all phone calls so people would hear my voice and not visualize me drooling and confused.  ”I’m fine,” I told her, “but I had a little medical thing happen and we need some help with the kids because I’m going to be in the hospital tonight.  Just for some testing.”  She was not particularly calmed by this and demanded to know what this “little medical thing” was.  ”Um, well, I kind of had a stroke,” I said.  ”But just a little one.  Well, a couple little ones.  But I’m fine.  I’m going to be fine.”  She got ahold of my other sister and they both made it to my house in record time, where Hubby met them with the kids.  Since our only car was still up at my office (Hubby had biked to the hospital with the kids), a neighbor gave him a ride to go fetch the car.  I would advise that if you have a coworker drive you to the ER, give them your car keys and ask them to arrange for your car to make it back to your house.  You’ve earned the favor and it certainly simplifies things later.

I felt surprisingly calm through the whole experience until Hubby left with the kids.  My whole world just walked out of the room and left me.  I sniffled while a tech did my EKG (normal) and the new nurse got my information so I could be admitted.  The tech handed me a kleenex and told me I had cute kids.  The nurse asked me their names and interests between questions about my medical history and whether or not I did drugs, smoked, or felt safe at home.  I was sent for an CTA (a CT scan of my arteries) and visited by a neurologist, who finally explained everything in detail.  I’d had several small cerebellar strokes, all caused by a vertebral artery dissection (a tear in an artery in my neck), which itself was due to an anatomic variation that made me more prone to such tears.

While the neurologist was talking with me, transport came to take me up to the neuro tele unit.  Tele is a step down from ICU and stands for telemetry…meaning I’d be hooked up to monitors all night so they’d know right away if I died.  In the past, I would have been in a ward where a nurse could have kept a watchful eye on me all night.  With the advent of private rooms, they needed a new way of tracking us.  There was also a check-in sheet next to my door that every person would initial as they came in, presumably to track who had checked on me when.

The neuro tele nurse was nice enough, but I soon found that I was going to be subjected to “protocol” during my stay.  You see, hospitals set up protocols to make sure that everything that is supposed to be done for a particular diagnosis is done.  And you can argue until you’re blue in the face that there are actually reasons for the various steps in the protocol and those reasons simply don’t apply…and nobody will listen.  I was hooked to an IV running at 75ml per hour.  As I was drinking about 32 ounces (950ml) of water every couple hours, I felt that this IV fluid was unnecessary.  ”Protocol,” I was told.  I explained that I’m a healthy breastfeeding mom and that all that this IV was doing was making it hard for me to do the things that would speed my recovery.  The protocol was meant for people who had severe cognitive problems from their strokes and could not be trusted to drink enough water.  Besides the fact that the IV tied me to an IV pole, the machine that was pumping in the fluid would alarm every time I bent my arm, which made it almost impossible to knit or attach my breast pump to my chest.

I was fitted with compression stockings (to keep the blood from pooling in my legs and causing a clot) and SCDs (sequential compression devices…they are worn around the legs and have tubes going to a machine that blows them up and then releases them, squeezing and relaxing, keeping the blood pumping.  I explained that the SCDs would keep me from moving around and that it was better for me to be walking and moving my legs myself than to have the SCDs and since the SCDs kept me from being up to get up, they were actually hurting and not helping.  ”Protocol.”

I asked the nurse to call the doctor who ordered the protocol and request an order to stop it.  I was told they always follow protocol on the neuro tele unit.  It was unit-wide, not a particular doctor’s decision.  ”But I’m 31 years old, healthy and active, and my outcomes will be better without the protocol,” I argued.  (In retrospect, I really feel sorry for the nurses who got stuck with me.)

And so I found myself tied to my hospital bed by the ankles (with the SCDs) and my left arm (with the IV).  My right arm was the one affected by the stroke and fairly uncoordinated.  I was angry about the protocol, lonely from being away from my children at night for the first time in their lives and my husband for the first time in almost 4 years, and just scared enough to not be able to sleep.

So I did what any spirited person would do in such a situation: I started working on my escape.

See the original article:

From Person to Patient

in Rocky Mountain Stroke Survivor