The Patient's Perspective

Feb. 24, 2018

It was Thursday afternoon and I had to leave work early to drive up to the Neurological Associates clinic in Kirkland for the nerve conduction study.  My appointment time was 4:30 and like a good little patient, I showed up half an hour early.  After years of medical appointments and procedures, it’s a good practice, especially since paperwork is always part of a first-time visit.  The waiting room only had four people, who I discovered were family members of the clinic’s patients that were already inside being treated.  I looked at the wall and saw how many physicians practiced at that clinic.  There were eight and I didn’t expect all of them to be having clinic hours at the same time.  And yet, I was called in forty-five minutes after my appointment time on a slow afternoon.

The neurologist himself called me in and walked me back.  I was already irritated due to the extended wait time, and so when he walked fast and kept looking back at me, I wanted to sarcastically say, “yeah buddy, I have a bit of a physical disability, and it took you guys 45 minutes on a slow clinic day to call me back.  I’ll get there when I get there.”  As we sat in the tiny exam room, he didn’t seem to know what I was there for.  He didn’t have any semblance of a chart or a tablet to enter notes on, or even a clipboard with a sheet of paper on it.  When I told him that I hadn’t been given any information about this appointment besides the clinic name, address, phone number, and that I’d been referred for the nerve conduction study, he stood back up and went outside to get my referral.

We discussed how long I had been using a cane and why.  Apparently, he didn’t listen as closely as I hoped because the examination was of my calves and ankles, and testing was done more on one leg than the other. 

He had me lie down with my pant legs rolled up, attached the electrodes to spots on my calves and ankles, and sent what felt like mini-shock waves to test the nerves.  Afterward, he conducted the second half, where needles were inserted into the muscles.  It’s not as bad as it sounds, but it’s not fun either.  Well, the needle part didn’t bother me as I didn’t feel a thing and he kept increasing it to the highest point.  Finally, he tested my reflexes and determined that I have less feeling in my left leg than the right, but no nerve damage in either calf.

The only good thing in this whole experience was that there’s no discernable nerve damage.  And now, more than a week later, I haven’t heard from the surgeon that referred me for the nerve conduction study.  Guess who will be making some calls on Monday?

Feb. 24, 2018

Something new for this patient.  A nerve conduction study.  You see, I was supposed to be in the process of getting a spinal cord stimulator trial, but my insurance denied it as well as the following appeal.  It was determined that I had to undergo a nerve conduction study.  Even if you’re medically inclined, meaning you’ve had education, earned a degree, and have the added bonus of unofficial training, this can sound a little scary.  For me, it was, even after everything I’ve been through medically since October of 2013.  But let’s break it down. 

Merriam-Webster defines, “nerve” as: any of the filamentous bands of nervous tissue that connect parts of the nervous system with the other organs, conduct nerve impulses, and are made up of axons and dendrites together with protective and supportive structures.  Merriam-Webster defines, “conduction” as: transmission through or by means of a conductor; also : the transfer of heat through matter by communication of kinetic energy from particle to particle with no net displacement of the particles or the transmission of excitation through living tissue and especially nervous tissue.  Lastly, the Merriam-Webster definition of, “study” is defined as: application of the mental faculties to the acquisition of knowledge.

Yep, still scary sounding.  My experience with the clinic that did it didn’t help my “nerves” one bit.  Let’s start from the beginning.

I was supposed to hear from the neurological clinic within a couple days of receiving the referral.  It was sent over on a Thursday morning and by the following Tuesday morning, I hadn’t heard anything, so I called them and ended up having to leave a message and wait.  Imagine doing this while fighting fibromyalgia flare-ups, Adult Still’s Disease symptoms, lumbar stenosis pain radiating down to the toes of both legs, and thoracic spine arthritis pain.  My hopes were high for the spinal cord stimulator trial.  I also hoped that this nerve conduction study would bring me another step closer to getting it.  Luckily, I heard back that afternoon from one of the nurses.  She found my referral and was able to schedule me for that Thursday.  Sounds good, right?  It did, until she mentioned that my referral only had my name and phone number.  Nothing else.  This was not a great start.

 

Next…day of the nerve conduction study.

Jan. 9, 2018

Beware, this last entry for ER experiences is long.

I was finally wheeled to a room.  FINALLY!  I’m immune-compromised and should not have been in a hallway where anyone with a communicable disease could spread their germs!  The tech that wheeled me from one end of the emergency room to the other was nice and funny.  He kept me entertained and kept asking if I needed anything else so he could get it for me.

Once I was settled in my bed, my nurse was a woman that gave me the feeling that she was a smug one.  I don’t know why, but I had a feeling that I wouldn’t like her.  Wouldn’t stop me from being polite, but I couldn’t shake the feeling.

I needed to have my specialty medication, so I called and had my sister bring them to me along with a pillow.  My sister, my rock, even took it a step further and brought one of my power banks because she knows how I am about my phone.  She offered to stay with me, but I couldn’t have her trying to rest in one of the chairs or even in the bed with me (there wasn’t room because of my fat ass).  She showed her hesitancy in leaving me, which shows how amazing my sister is.

After informing the rest of my familia and rydas that I was admitted and in a room, I finally was able to rest a bit.  The bed was adjustable and made sleeping a little easier.  Not that I got much sleep, no matter how hard I tried.  I hadn’t had anything to eat since 8am and nothing to drink since 12pm.  Though my body had that bag of hydration trickled into it about two hours prior to admission, my mouth and throat were bone dry and I kept coughing.  This nurse took it to mean that I was having problems with sleep apnea.  She woke me up so she could hook me up with the oxygen cannulas. 

I kept waking up due to pain.  I woke up again around 4am with the need to use the restroom.  I kept pressing the nurse call button, but no one came.  After an hour of waiting, I took off the blood pressure cuff and the ECG wire so that the alarm would sound and get someone’s attention.  Half an hour later, still nothing.  I finally got her attention by yelling.  My yell can be compared to a sonic boom.  I should have done that sooner.  An hour and a half of waiting for help!  What if I was in serious distress?  I could have died waiting for help.

Then around 6am, she woke me up because she was adding antibiotics to my IV.  I asked if I could finally eat or drink something.  She literally had no idea and had to take the time to search my chart.  Yes, I understand that she has other patients and that she has to follow the orders in my chart.  Is it really that difficult to let one of your patients know that they can drink something if they need to without them having to ask?  Anyway, she finally said yes to both.  Breakfast was due to be brought in between 6:30 and 7am, so I had to wait until then.  No problem.  But I needed water.  When I asked for it, she brought me a small cup filled with ice and a small amount of water.  I asked for water, not a cup of ice.  Maybe my expectations are too high?

After drinking all the water, I settled back down and fell asleep.  I woke up again when I heard some noise in my room.  A tray had been placed on the counter near the sink.  I tried to get up and get it, but my IV lines were too short and I could not reach the tray.  And I suddenly need to go to the restroom again.  Guess what I did.  Go ahead.  Yeah, I pressed the useless nurse call button with the hope that I had been pressing it wrong.  Nope.  From 7am til my parents and sister arrived at almost 9am, I had been trying to get someone’s attention. 

Finally, I got a new nurse, a male named Harold.  He was sympathetic and cheerful.  He unhooked me from the IV lines and let me go to the bathroom.  When I got back, he hooked me back up.  

My sister was able to bring my breakfast tray to me.  You know the saying about hospital food being bad?  It’s not an exaggeration.  Just a warning to those who are lucky enough to not have had to eat it.  Dry “French toast,” rubbery scrambled eggs, and two small sausage links, accompanied by orange juice (I hate orange juice) and a cup of Mandarin oranges.  I have to admit, when you’re practically starving, you’ll eat what they give you.

Between 11:30pm and 10am, I had not seen another doctor.  Hell, I barely saw a nurse.  However, I discovered why I had to wait for someone to come help me after pushing the nurse call button is that the ones on the bed do not work.  There was a kind of remote stashed in a basket of supplies BEHIND the bed.  The tech that transferred me apparently had no idea that the buttons on the bed were useless and failed to mention the other remote.  It worries me that things aren’t working in the ER rooms, especially the important things like nurse call buttons that patients need when there are serious issues.

I was discharged at 12pm with a prescription for antibiotics and the reminder to elevate my legs and use the compression stockings to help the fluid flow.

The good part in this whole thing?  I had concerned and loving friends who kept checking on me and did things just make me laugh.  I even had a lovely friend who helped me meditate because she knew I was starting freak out.

 

The moral of this long story?  Beware of changes in your skin and the rest of your body.  They could signal a bigger issue than you’d expect.  Listen to advice given by concerned friends.  Lean on those who reach out.  They do it because they care.  Also, do everything you can to ensure that you get the best care possible.  Problems with your health do not just affect you.  They affect your loved ones as well.

Jan. 8, 2018

On the following Wednesday, I saw my primary care provider.  She prescribed medication and wrapped both of my legs.  She scheduled me for a follow up in seven days and told me to go straight to the ER if the symptoms worsened.  She had a feeling it was an infection.

By Friday, my calves had gotten worse.  They were bigger and more painful.  After having gotten advice from priceless friends, one of them a rockstar nurse, I went back to the ER, and it a little bit better than the last visit.

The ER was packed, and I was by myself as everyone was at work.  I checked in and sat as close as I could to the triage rooms so that my pain-filled walk was a short as possible.  I gave the triage nurse a heads up about my health status, my medication list, and informed her that I was just there the previous Saturday and came back due to worsening symptoms.  Four and a half hours later, I was in yet another “room” in a hallway.  I was wheeled in and transferred to a gurney.  Let me tell you, if you have never had to spend hours on a gurney and no other option, you are lucky.  They are painfully stiff and are horrible for people like me with fibromyalgia and spinal issues.  I had two flareups from the time I laid down on it until a doctor was able to see me.

This time, I had a nurse that seemed to care.  She was genuine in her concern and her care of my needs.  The ER doctor that finally got to see me?  She was a hundred times better than the one I saw on Saturday.  I was lying on my back, with my beanie covering my eyes and trying to rest.  She gently placed her hand on my arm and gently got my attention.  She was genuine in her concern for my problem and didn’t seem to rush to get me out of there and open up a bed.

After a round of lab tests, I was given intravenous fluids.  I was told that I was going to be able to go home with a couple of prescriptions for antibiotics and pain medication.  That made me happy because I hated the gurney.  As a precaution, they took another sample for lab tests.  When that came back, I was informed that I was being admitted because what had begun as a skin infection turned into a systemic infection and my discharge time unknown.  I needed to have a few rounds of IV antibiotics as well as hydration as I was dehydrated.  The nurse that informed me of it was sympathetic.  She made sure I knew that it was serious because a systemic infection for someone with my health status is very dangerous.  She warned me that if I had waited longer to come in, I would have had a serious problem with sepsis.  That was more than the nurse from Saturday gave me.  This nurse searched and found a pillow for me.  They were low on supplies and pillows were like unicorns.  That comparison made me laugh.  She tried to help me be as comfortable as possible and used humor to ease it all.  She also informed me that I’d be moving to a room with a bed that was more comfortable than the gurney I was on.

Finally, at 11:30pm, I was approached by a doctor that didn’t seem to understand much English, was rough in his examination, and curt in his responses to my questions.  This signaled to me that the next phase of treatment wasn’t going to be a good one.

 

Next…emergency room experiences part 3.

Jan. 8, 2018

Everybody hates to go to the emergency room (ER), right?  Well this episode of the AOC Patient Files is about my two recent experiences at my local ER…and they are NOT good ones.

On December 30th, I was advised by a rheumatologist and a registered nurse (RN) to go straight to the ER because I suddenly had huge calves (I am a big woman so they’re big on their own, but this was extreme) and they were swelling, red, painful, and warm to the touch.  Based off my professional and personal experiences, this wasn’t a good sign.  In fact, it was a sign of infection.  Normally, this wouldn’t scare me so much.  However, I am immune-compromised and am on what is known as a form of oral chemotherapy, so my immune system is further weakened.  Infections could mean my life.

I checked in and told the nurse I was in a lot of pain and have a possible infection.  Luckily, I had my sister and sister-in-law with me.  Why luckily?  They are my rock-solid support team.  They go to every one of my procedures and are there for moral support and entertainment.  At this ER, my sister got me a wheelchair, so I wouldn’t have to walk everywhere.  My calves had stabbing pain and burned with each step.  And considering my weak immune system, my sister got me a mask to wear.  The ER was packed, and we were surrounded by people coughing and hacking who weren’t wearing masks.  My sister put my health before my pride, which was exactly what I needed.  She’s always looking out for me.  When I’m too weak to do something for myself, she does it without me asking.

A nurse brought me in to access my port then a radiology tech brought me in for a chest x-ray.  After a few hours, I was finally brought back to a “room” in the hallway.  This concerned me because I had explained to the triage nurse about my health status and my medication list, yet I was brought to a partitioned section of one of the hallways for treatment.  The excuse we were given?  That it was the fastest way to get treated.  Even though the alarm blared in my mind that this wasn’t the safest place for my treatment, I was too weak to say anything.  I had become exhausted and weak.  My body was going through so much that I couldn’t do much for myself.

In the “room,” I was kicked back in the recliner and the ER doc that saw me had no bedside manner.  He would appear around the partition with a loud, “hey, so what’s wrong here?”  I was kicked back with my eyes covered by my beanie, had a mask covering my nose and mouth, and barely moving.  I understand that the ER was packed with patients and he had a lot to do, but a little consideration would have gone a long way.  Anyway, he sent me to have an ultrasound and then four hours later, determined that it was just peripheral edema and I needed to use compression stockings and elevate my legs as much as possible.  His explanation for the pain and swelling was that it was my skin’s reaction to having to expand.  That’s it.  Then I was sent home.

I own compression stockings and tried to elevate my legs.  The elevation part is hard because I have fibromyalgia and spinal issues.  I can’t stay in certain angles or places for long.  The pain would become too much.

 

Next…emergency room experiences part two.