Day 48: Getting a Diagnosis Part II of III

Day 48: February 20th 

Location: Johns Hopkins University Hospital – Baltimore, MD

This blog entry is the second post of a three part series detailing how I received my CRPS diagnosis. To read Getting a Diagnosis Part I, click here.

Emergency room waiting rooms can sometimes present more stories in one day than an entire season of ER. There are also plenty of hospitals with quiet ERs. Sibley Hospital in D.C., where I just was, for example. Johns Hopkins is just too big to have a quiet ER.

Crissy, my parents, and I got into the car at 11:30am to make the drive from Potomac to Baltimore. It should normally be about 45 minutes to an hour. We left our little angel Chihuahua, Belle, home in the house alone with an unknown amount of time we might be away. I felt awful for her. There was a car accident or construction traffic on I-95…it may well have just been the typical random backups we get in our area, I can’t quite remember. We got to Hopkins at 1:15pm – not exactly the start I hoped for. We had yet to hear back from our team of helpers if they were able to reach some of the high-level Hopkins stakeholders to get us in without going the ER route.

Upon initial registration at the ER, I was told the wait time was an estimate 4-6 hours at that point. After seeing the triage ER doc, I learned the wait was actually 10-24 hours. 10-24 hours in the ER? What!?! Lord, I hope one of these contacts pull through and gets me admittedly more quickly.

 

I took a seat in the only part of the waiting area that had at least a second available seat in the room so at least Crissy and my parents could alternate sitting. I did my best to stand up some on my own though I simply didn’t have energy to do it and the pain was pretty much unspeakable. The mannerisms of the people we encountered waiting in the same area pretty much became a welcome distraction from pain. I don’t mean that in a sense we were above anyone there. I hurt too much to even try to sleep in a hard plastic chair. The experience was eye opening into the way many people live their lives and how dangerous addiction, poverty, and lack of education can be to one’s health. Here I am, a child from an upper middle class home, a white man with a college degree, and a successful career with 6-figure earnings and I’m wondering if my terrible state is more or less fortunate than some of the people around me. Anxiety to say the least.

 

I’m not pointing out any of the environment below to diminish anyone or discredit people. Many of the men and women around me were also feeling very sick or in pain and most had supporting family or friends with them. The notes are really just to share what I observed for 10 hours or so. It’s important to note that the racial demographics of this group were predominantly white/caucasian and not a minority. Among the things I witnessed:

  • A woman and self proclaimed cancer survivor in the hospital and coughing with a suspected flu.
    • She sat at a 90 degree angle from me.
    • She rarely covered her mouth when coughing.
    • She didn’t wear the mask the triage nurses gave everyone.
    • She took cigarette smoke breaks every 15 minutes while her husband sat in her seat.
    • Every time she came back in from her smoke break in the cold, she reeked of cigarettes.
    • She complained quite loudly when she missed her turn to go back because she was out taking a cigarette break while her husband left to get food.
  • A younger man in the hospital for the flu.
    • He at a 90 angle from me and next to the cancer survivor with the flu.
    • This guy was very pale. He looked green.
    • He too was coughing his head off and only sometimes wore his mask.
    • He was dripping with sweat on his forehead and clearly had a fever.
    • They wouldn’t give him anything more than an ice pack because of hospital policy. I don’t even think they had an available blanket for him despite him asking several times.
  • A younger, likely around 18-20, pregnant woman
    • Sat next to her.
    • She volunteered she was pregnant with her second child and the unborn baby’s father is a deadbeat dad like the other child’s father.
    • She was there to get a sonogram of the baby because she feared something was not right.
    • Sitting next to her, she smelled like liquor and cigarette smoke.
    • She ended up bumming two cigarettes from the cancer survivor.
    • She smoked one of the cigarettes…not outside…in the waiting room.
    • She stuck the other cigarette in her ear.
  • A very obese man in the hospital for breathing issues
    • He sat on the other 90 degree angle from me. My mom was ever so fortunate to sit next to him.
    • This guy was a very loud breather.
    • He didn’t want his blood pressure taken, he just wanted to be taken back ahead of everyone else
    • He continuously ate vending machine munchies.
    • Got on his phone and spoke very loudly to someone who had to be a relative. I heard every word as to why he was pissed off that someone in his inner circle was a total screw up. He was so loud he was red in the face.
  • An elderly woman who had fallen and was injured.
    • Hopkins seated her in a wheel chair.
    • She wasn’t too pleased with her level of comfort and less pleased with the wait times.
    • She had zero shame in getting loud with the various people that came by to check on us and he would take out her frustration on them each and every time.
    • She too had an affinity for smoking cigarettes as she voiced wishing to go outside and smoke, but her husband wouldn’t take her to do so in the wheelchair because he feared they would lose their spot in line like the other lady.
  • A family who was there with a teenage daughter that had a huge swollen eye.
    • Wasn’t clear whether it was some sort of accident or some type of assault.
    • Some of her family members seemed really angry and vengeful so Crissy and I guessed she was possibly assaulted in some way.
    • They too got quite worked-up about the wait.

Taking a comedic look at it, in some ways, the room resembled that scene in Beetlejuice, Tim Burton’s 1988 blockbuster hit starring Academy Award winner Michael Keaton, with a long line and an interesting cast of characters. I hope this doesn’t offend anyone. Simply when in so much pain and it the scene so memorable, I’d be lying if I told you the thought didn’t cross my mind.

 

As you can see, I had a lot to observe and distract me from my pain as best as possible. The folks in the ER left a lasting impression on me.

 

During this time, Dr. Morrison and Dr. Sethi faxed up all of the records to date so that way the Hopkins docs would have some background. We were really hoping and praying one of my family members, my friend, or one of my doctors would pull through for me and get me admitted into the hospital. Unbeknownst to us at the time, the strings we pulled were working. We later found out my cousin, Todd Forster, had the connection that helped get me more urgent attention.

 

Finally, at about 11:00pm, I was called back to get a room in the ER and for a full examination. The nurse that brought me back couldn’t have started out more cold. She wasn’t thrilled with me bringing 3 people with me. We were concerned and it had been all day. I wasn’t leaving my wife or my parents behind. They brought me into a room that was more like a supply closet – the room was actually filled with shelves and various medical equipment. After they wheeled in a stretcher, I finally had a bed. The neurology department would eventually come down to see me.

 

At about 11:45pm, Dr. Ivan – he even joked nobody could pronounce his last name and I don’t remember it – showed up to review what he had read in my file and do a few quick neurological tests. At the time, we didn’t know if his plan were to admit me into t he hospital or if I would get discharged and told to come back upon room availability in the main hospital. I remember the only thing I ate all day was a jolly ranger to help the dry throat I gained in the hospital. The pain was so intense and my nausea was so high that I could only stomach one candy and water. My tongue was still blue by the time I was examined by Dr. Ivan. He made jokes about what I ate to help keep it light. During his examination, he told us a few things: 1) my medical workup thus far looked very good, he wasn’t an expert on CRPS though I presented some sign of the disease, he was very concerned about the shaking in my brachial plexus (part of the chest) and to his knowledge wasn’t directly related to CRPS, my speech was not very coherent and that concerned him, and lastly the movement in my mouth made him wonder if I did have a stroke or bells palsy. Crissy, not my parents, dispelled the bells palsy idea when she let Dr. Ivan know I’ve always had a slight degree of lip movement being uneven when smiling or talking. Never really knew – I guess I don’t talk to myself in front of the mirror. Dr. Ivan’s analysis was to run the gambit on tests including X-Rays, more MRIs, 100+ blood tests, EKG, EMG, ENG, and additional nerve conduction studies were coming. Eventually, he told us he was admitting me into the neurology department to run all of the tests. He also finally wrote for some pain medicine, tramadol, which would help reduce the pain to a degree. I really didn’t want the narcotics, but figured anything to get me an hour or two of sleep couldn’t hurt. My wife and my parents said their goodbyes for the night and left around 1:00am so they could get some rest. I was moved to a room in the neurology department around 2:30am. Rest wasn’t coming for the weary. I had my first x-ray coming up at 5:30am.

 

Stay tuned for Getting a Diagnosis Part III in a couple of days. Again, if you missed Part I, please visit it for medical information and tests one might be able to run if you’re worried you might have CRPS.

Continue to Part III of III: Getting a Diagnosis.

Beat CRPS!

Jason

 

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