2013-03-26 19.12.03

What Exit in New Jersey are you from?

This is a picture of MY “ROOM” IN THE EMERGENCY ROOM (”ER”), taken by me on Tuesday, March 26, 2013, at a New Jersey Hospital’s Emergency Room (“ER”).  That hospital’s security personnel demanded I delete this picture from my phone under the guise that the hospital has a policy of no pictures being taken in the hospital.  While I am certainly sympathetic to such policies, the reasoning behind such polices is to protect the privacy of anyone getting treated inside the hospital.  In that regard, I would NEVER take a picture of a patient or of any person; but as a Consumer I felt it appropriate to capture the essence of how I was mistreated in this emergency room and this image of my “room” seemed to safely capture that mistreatment.  I was not deleting the picture.  I also was sensitive to the security guard’s concerns about me somehow “identifying” the hospital and thus possibly picturing it in a false light.  To that end I agreed with him and that’s why this picture is simply of an EXIT SIGN and I defy anyone reading this to possibly associate this EXIT SIGN picture with the hospital ER in which I took it in – i.e., based strictly on the picture.  This was reason number 2 I was not deleting the picture.

I had several other similar “generic” and unidentifiable hospital/ER pictures on my phone which also captured how I felt I was mistreated but because the security guard was so kind, logical and reasonable, I deleted all of them except the ones above and below because I was not, and am not, looking to castigate this particular hospital or its personnel since I envisioned this particular emergency room nightmare experience as merely symptomatic of a system overtaxed by many Uninsured Patients who look to their local emergency room as a source of Primary Care.  That said, emergency rooms in the United States are designed to render triage medicine but the ER “triage medicine model” is on steroids out of bare necessity to keep up with the demands of serving its respective local community.  If the New York Yankees slugger Alex Rodriguez is any example of what happens to steroid users over the long run, it is no wonder why our ERs are consistently providing unsatisfactory “consumer” results.  Still, in Forty (40) years of going to hospitals and emergency rooms, this was BY FAR my worst experience in over 200 hospitalizations and ER trips.

 Cropped IV Pic March 31 2013

This second picture depicts my status when, after 6 hours or so, I was escorted out of the ER, and was forced to remove my own Intravenous Line (“IV”) causing my blood to squirt so high it almost hit the ceiling,  Ergo, this picture, which was actually taken 2 days later to show the bruising of my obviously poor medical technique.  Combining the two (2) pictures to create a collage of sorts; there was no door, no curtains, no privacy; no HIPAA compliance since I was barely being treated; just a gurney, under an Exit Sign, in a hallway in the ER, where I was essentially IGNORED for 5-7 hours.  My medical problems and responding treatment had dehumanized me to the point where some might say I was now just a lyric in a great Bruce Springsteen song like “Jungleland” where its characters agreed, “they’ll meet ‘neath that giant Exxon [i.e., Exit ] sign, that brings this fair city light.”  If that doesn’t typify the stereotype about New Jersey, …  Still, my experience at this particular ER, at this specific hospital in New Jersey, on this particular night and for my rather complex condition, is not at all representative of other fine medical institutions in New Jersey or even of this particular hospital’s ER since it’s not fair to judge the quality of an ER based on one person’s experience on one given night due to the variety of subjective parameters.  Now that the Disclaimer is out of the way, …

The Patient Consumer in a Hospital Emergency Room

Now that I’ve set the stage for this ER debacle and in my previous Part 1 of 2 Blog Post detailed how serious my last bout with the Lung Condition BOOP was to provide some context for said debacle, please note this Part 2 of 2  details the “consumer” side of things which prompted me to call my credit card company to cancel the $100.00 ER fee I had to pay pursuant to my Health Insurance Plan.  More specifically, just as I might revoke a credit card charge to a shady automotive repair shop which I thought had ripped me off, I did the same with this $100.00 Emergency Room charge as I believed the services rendered to me were almost non-existent and I thought it was unreasonable to pay for being either mistreated or treated like an animal.  I don’t blame any one person in that ER but my experience made me re-think how I must use a hospital ER moving forward.  I hope you come to the same conclusion after reading my story.

“Alice’s Restaurant Massacre” by singersongwriter, Arlo Guthrie

Yes, this has been a rather long Post but I beg you to hang in there with me because you need to understand the complexities of the past when you try to find an answer to a difficult medical problem once resolved but nevertheless presented again.  I chose the “Alice’s Restaurant” subtitle above because writing this Post reminds me of listening to that song every Thanksgiving.  It goes on and on yet I always find the storytelling compelling.  I hope I’ve carried on that tradition.

Passed out on a Treadmill

So, approximately 6 weeks ago, I passed out on a Treadmill while walking VERY slowly and figured I was getting sick.  Each day I woke up I seemed to have absolutely NO ENERGY and it felt like each leg weighed 1,000 pounds.  That’s happened frequently throughout my life because of my Crohn’s Disease but this episode seemed particularly disabling.  Soon thereafter I developed a cough, saw my Internist, took cough medicine and basically was being treated for Bronchitis/Pneumonia.  I didn’t even relate it to a possible recurrence of the Bronchiolitis Obliterans with Organizing Pneumonia (“BOOP”) because I did not have Shortness of Breath, YET.  Once I developed a difficulty breathing and talking at the same time, it was as if my body was following the same exact pattern when I had BOOP in 2011 (see Part 1 of this Blog Post).  This time, however, the lovely NYC pulmonologist no longer practiced in NYC and due to being disabled and financially broke; I needed to find a NJ pulmonologist in my Health Insurance Plan who was qualified to take on my very complicated case.  Thankfully, a close friend recommended a female NJ pulmonologist who happened to be in my health insurance plan so I made an appointment.

The New NJ Pulmonologist

While pursing the pulmonary aspects of my present situation, I kept my NYC Crohn’s doctor in the loop and promised to see him after I secured the most appropriate NJ pulmonologist and had obtained all the test results needed to devise a collaborative treatment plan.  I didn’t want to believe I had BOOP again but my breathing quickly began to feel like I was sucking air out of a toothpick-sized straw and I had difficulty breathing and talking at the same time.  I went to the 1st appointment with the NJ pulmonologist with an open mind and a positive attitude and I’m glad I did because she was GREAT.  She knew all about BOOP and its potential relationship to Crohn’s Disease and other autoimmune diseases in addition to its possible connection to these “Anti-TNF Agent” drugs such as Remicade, Humira and Cimzia.   More importantly, she LISTENED for quite a while as I felt the need to impress upon her how complex my 2011 BOOP case was but how towards the end of that journey there was a Pathology Report from Mt. Sinai Hospital which cast some doubt as to whether I actually had BOOP even though the Prednisone clearly failed and the chemotherapy drug, Cytoxan, clearly worked.  She took notes and then handed me a list of the Medical Records and copies of the 2011 Diagnostic Tests and Reports she needed for comparison purposes for all new 2013 tests.  THAT is how to practice medicine.

Because I felt I was getting worse VERY QUICKLY and my physical symptoms echoed that sentiment, the NJ pulmonologist quickly ordered all the correct diagnostic tests and insisted that I at least try the 60 mgs of Prednisone until she got more data in and observed my response to the Prednisone.  I trusted her so that’s what I did.  That afternoon I somehow garnered up the strength to get her all the pertinent test results and records she had requested and a day or two later I had the definitive 2013 CT scan.  It is VERY IMPORTANT for Patients to keep such good and accessible records because when you have a complex medical condition the quality and speed of your care will ultimately depend upon how quickly and comprehensively you are able to provide these records to your current doctor.  This includes copies of Film studies, Reports, Operative Notes, Pathology Reports, Blood Work and Physician Notes.  My new doctor, like any thorough physician, wanted to be able to compare my 2013 CT Scan with the worst Scan I had in 2011 to provide her with the proper context and I was able to accommodate her in an efficient manner.  Chronic patients don’t like being sick but that’s inherent in the “job description,” but I have found that one of the most effective ways to ensure longer periods of good health (i.e., the best we can hope for) is being an Assertive and Engaged Patient.  In this context, that meant facilitating my doctor’s polite requests for DATA.   The doctor called me with the results of the CT scan and it clearly showed I had BOOP again but compared to the CT scan I had in 2011 just before the lung biopsy surgery, it did not look nearly as bad.  However, my symptoms were at least as bad or possibly headed to worse.  Unfortunately, BOOP is microscopic so there was no telling if I was at the very beginning of this BOOP episode or if it was as bad as it was going to be.  Regardless, it was time to batten down the hatches.

BOOP Take 2 – Treatment Plan 2013

The plan was to take the 60 mgs of Prednisone for 2 weeks until I saw my doctor for a Follow-up visit.  In the interim, I made appointments to see my NYC Crohn’s doctor and on the same day I had a long-ago scheduled follow-up with my NYC Pain Management doctor.  I have been on and off of narcotic pain medications so many times over the past 30 years that I most recently decided to try and go on a “Painkiller Vacation” despite always being in significant pain because I wanted to see how it would affect my life.  It took a while to wean down but “we” did it (i.e., my doctor and I) and I was narcotic-free for a few months.  The problem was that I was much more disabled as a result because the pain I got from the multitude of medical issues I have can be unpredictable and so intense that sleeping is the only way to get through them, i.e., without medication.

The Pain Management Plan

Up until a few months ago, I had always decided that I would take whatever drug I needed so long as it was prescribed by a duly licensed and responsible physician in order to minimize the disabling effects Crohn’s Disease would have on my life.  My attitude recently changed on that ever since I started being recognized as a leading Patient Advocate and asked to speak at different Healthcare Conferences around the world.  I also just launched a Peer-to-Peer “Patient Visitor Ambassador” program so that Veteran or “Warrior” Crohn’s, Colitis and Inflammatory Bowel Disease (“IBD) patients could be matched up geographically with “Patients-in-Need” so they could provide them with some “TLC” which is much needed with these tricky and often pervasive autoimmune diseases like Crohn’s.  It is called the “Crohn’s Disease Warrior Patrol.” I also got sick and tired of fighting with my health insurance company about how many pain pills I can get in a month and how many “Prior Authorizations” I needed to move forward with my life.  The insurance paperwork involved with trying to live and be productive with chronic pain became a full-time job and all that did was reinforce my underlying pain and physical limitations.  I simply wanted to try something different all the while knowing that it may not be possible for me to painkiller free.  But I’d only know if I tried.

That said, this episode of BOOP was getting worse and the very thorough NJ pulmonologist told me to carefully monitor my situation and if it got worse before our next appointment on April 2nd, I should go to the Emergency Room (“ER”) at her hospital.  Unfortunately, the Prednisone again didn’t appear to be working as planned and not only did my breathing get worse but last weekend I started to get that dagger-like pain in my lungs.  The front of my chest felt like a Piano was resting on it while my back felt like it was being stabbed whenever I tried to “pull” on a deep breath or sometimes for no reason at all.  Still, I was determined to stay out of the ER and make it to our follow-up appointment on Tuesday, April 2nd to reassess my options.  I just had to get through these doctor appointments in NYC on Tuesday, March 26th but the pain was getting worse and worse and I began to question how safe it was for me to even get in the car and drive.  However, it is VERY difficult to obtain timely appointments with these two (2) leading NYC doctors so I couldn’t reschedule them given the potential severity of my BOOP situation.

Tuesday – NYC then the New Jersey “ER”

The day started with me being the 1st appointment with my NYC Crohn’s doctor and he explained that the NJ pulmonologist had already made contact with her (which impressed me very much) but given how much pain I was obviously in, his initial take was that I belonged in the ER of the hospital in which she has privileges, which is in New Jersey.  Then he examined me and I saw that grave look of concern in his face which I have only seen a handful of times in the 30 years I’ve known him and it scared me.  He suspected I had Pleurisy, which would explain the severe “back” pain but he’s not a pulmonologist and instructed me to GET TO THE NJ ER.  Before I left his office, we discussed the efficacies of the Prednisone and how this BOOP episode seemed to be following the same exact track of the 2011 BOOP episode.  He concurred but also added that being on Prednisone for only 2 weeks in such a high dosage is not the end of the world especially if by doing so we were trying to avoid chemotherapy.  I told him I had to see the NYC Pain Management doctor before I headed back to New Jersey because I was in too much pain and wanted to make sure I had medication if I was not admitted to the hospital or for when I was discharged, if I needed it.  He understood and concurred since he had recommended this Pain Management Doctor to me many years ago.

The Nuances of Pain Management

I then went to see the NYC Pain Doctor and he also was intimately familiar with how I was “presenting” because he treated me for Pain during the 2011 BOOP episode, both IN and OUT of the hospital.  I told him that as per my NYC Crohn’s doctor, who has been in close contact with my new NJ pulmonologist, I was going back to New Jersey after we were done to go to my doctor’s emergency room. He also thought I may Pleurisy based upon the location, severity and “background” of the situation.  He then gave me a prescription for Oxycodone, which I have taken many times before.  I filled the prescription but didn’t take any pills because I didn’t want to “mask” whatever problem I had and I knew how complicated this could get so I thought it best to try and manage the pain until I got to the ER.  For those of you wondering why I just don’t see a New Jersey Pain Management Doctor, you don’t understand how hard it is to find such a compassionate doctor who nevertheless helps you straddle the fence between Dependency and Addiction and is stern with you when you steep too far one way or the other. I’ve tried to find a more convenient NJ Pain Management Doctor but they are getting harder to find all over especially after TV shows like Dr. Sanjay Gupta’s well-intended “Deadly Dose” which highlighted how people abuse Narcotic Painkillers.  (I produced a respectful Video Retort to Dr. Gupta’s show as a “voice” for those in chronic pain who don’t  abuse Painkillers and I’ve been contacted by MANY people associated with that TV show thanking me for showing “that side” of the situation.)

You also aspire to find a Pain Management Doctor who will help you maintain the best possible lifestyle given your physical limitations.  But there are also too many Pain Management Doctors who easily prescribe pills and patches without worrying about the consequences once the patient needs to “get off” these medications, for one reason or another.  There is also Health Insurance issues to consider as while it is counter-intuitive, many Health Insurers put limits on the number of Pain PILLS as opposed to paying attention to the Strength of the Dose prescribed.  Accordingly, in order to not have to be more dependent than necessary on the Pain Management Doctor, you need one who can help you navigate the almost barbaric and arbitrary rules set by each Health Insurer so that you can live your life without worrying about having taken one or 2 extra pills in a day and how that will affect your remaining monthly supply of pills.  In summary, it is a wonderful alternative for those battling chronic pain but everything comes at a price.

Entering the New Jersey Hospital Emergency Room

I had never been to this hospital before and was very impressed with how clean and organized the ER admission process was.  As a chronic patient, I felt like a Tourist “on the road to find out.”   But I was also intermittently writhing in pain as my back felt like it was on fire.  I had called my NJ pulmonologist’s office ahead of time hoping she could meet me there or at least leave a detailed message for the doctor in charge of the ER because it has been my experience that any personalized patient information communicated to the ER greatly facilitates the speed and quality of your patient care in the ER.  In that regard, she was made aware of my situation and I trusted that all would naturally work out.

However, once they “admitted” me into the ER, the only place or room they had for me was a gurney underneath the Exit Sign pictured above.  Recalling it aloud makes it sound like a line from Bruce Springsteen’s “Jungleland” but often times truth is in fact stranger than fiction.  At first, I didn’t really care about being “stationed” in such an open area because I was just happy I was going to be seen by a doctor.  But that logical approach changed after a nurse who claimed to be assigned to me examined my back with her hands and concluded with her secret diagnostic powers that it is only a muscular problem and that I should be fine.  I thanked her for her help but also tried to explain my history with BOOP, the most current findings of BOOP from a doctor on staff at this, HER, hospital and why I was in the ER but she had already made up her mind about me and my apparent “muscular problem.”  She did not listen to one word I said.  She had apparently made her diagnosis and in the interests of TIME and checking off each and every one of her responsibilities,  she was intendant to communicate that to the doctor in charge, as they grew very busy, so that me and my case could be quickly taken care of.  Who needs a CT scanner when Wonder Nurse works at the hospital?

Being labeled a “Drug Seeker” in an ER

I love nurses because they provide the last bastion of “continuity of care” in our chaotic healthcare system and they are usually incredibly compassionate no matter what mood a patient is in or how much frustration he or she demonstrates as they try to come to grips with their medical situation. But this nurse didn’t even listen to me explain that I was only in the ER upon the STRICT DIRECTIONS of the most experienced doctor I have ever known AND I have had this condition before and it feels like I have it again.  In retrospect, she apparently processed me as a “Drug Seeker” because from her perspective all I had was back pain and I was seeking to be seen by the doctor to help alleviate it, in the ER.   That’s not at all true because I was in the ER so that my entire BOOP situation could be re-assessed even if that meant admitting me because the high doses of Prednisone were not alleviating my breathing problems, and, now on top of that, I was experiencing severe pain in my lungs.  However, in due deference to Wonder Nurse, she too had to triage patients and I guess she had this full-proof system of applying her hands to a patient’s body to diagnose medical problems.  I have a friend who has a Blackjack Card-Counting System which works in a similar fashion.

What did I seek to Achieve by Going to the ER?

In all fairness to Wonder Nurse and to the ER doctor whom you will soon meet, it wasn’t really fair for me to “present” in the ER with such a complicated history and diagnosis and expect a successful outcome.  But where was I to go when my NYC Crohn’s doctor and my NJ pulmonologist instructed me to go to the ER if my symptoms changed, and they had?  This is a rhetorical question because I was now in pain but if the pain was just par for the course with the BOOP, I had already been given pain medication so all I had to do was stay the course at home and my NJ pulmonologist would soon devise the appropriate  treatment plan.  That’s easier said than done, and I’m just thinking out loud here, because the combination of struggling to breathe, severe back/lung pain and a history of serious systemic medical problems from such a high dose of Prednisone was like the devil on my shoulder telling me to go to the ER.  That devil got nudged a bit when my longtime NYC Crohn’s doctor INSISTED I go to the ER.  There’s something about being unable to breathe normally which empowers a patient to want to be seen by a magical doctor who could waive his or her wand and make it all better.  But, as also pointed out to me by my NJ pulmonologist when I was forced to call her FROM THE ER, what did I expect, the ER doctor to start infusing Cytoxan into me?  She was right, as I wouldn’t have let Wonder Nurse or the ER doctor pop a pimple for me let alone administer chemotherapy.  And I write that with all due deference to the magical diagnostic skills of Ms. Wonder Nurse.

Waiting for the ER Doctor was like waiting on a line for a Concert Ticket Bracelet

Despite my utter frustration, I tried to maintain a positive attitude in the ER and I know, probably better than most, how hectic an ER can be and that there are ALWAYS patients sicker than me.  However, with the knowledge that I was already under the active care of a Hospital pulmonologist and had already been diagnosed with BOOP, and if the ER doctor had read my file he would have seen that I also had it in 2011 and went through hell as a result, you’d think I’d be seen within an hour or two but it took almost 3 hours for the ER doctor to grace me with his presence.  During that much anticipated wait, I was left to lie on that gurney writhing in pain BEGGING for someone to help me.  I felt like a DOG who had been run over by a car who now posed such an ugly picture and stench that people just passed him by.  Whenever Wonder Nurse would walk by to get access to see another patient (after all, I was in the middle of the hallway so it was impossible to avoid me) and hear me politely ask for help, she would patronize me with false claims that “the doctor knows all about you and will be here soon.”

“Soon” came a few hours later when a very polite and kind doctor INTERVIEWED ME.  He never touched me or examined me.  I suppose he had grown accustomed to relying upon the magical diagnostic prowess of his Wonder Nurse.  I asked him to PLEASE call my doctor and I also succinctly explained the BOOP situation – both past and present. He said he would come back and give me some medication to make me “comfortable” and then he would examine me.  He then asked me about which medications work for me and I explained how I’ve seen a Pain Management Doctor on and off for 30 years so I know exactly what works and what doesn’t work.  But in-between sharing this information with him, I could barely breathe and I was also interrupted by severe pain.  He then darted off and I assumed he was going to call my doctor and start the process of addressing my pain and then taking an x-ray, blood work, EKG, etc.  It seemed I couldn’t exist outside a hospital with all of these symptoms and needed some relief or answers.

I was getting scared by the progression of the BOOP, or whatever else was wrong with me, yet for some odd reason after being “interviewed” by the ER doctor and “diagnosed” by Wonder Nurse, I didn’t feel as if I were in the right place.  I couldn’t put my finger on why or when I felt I didn’t belong in THAT ER but I think it began when no-one seemed interested in my medical background and current diagnosis of BOOP.  Another hour went by when Wonder Nurse came back to start an IV line (which she did very well) and then she gave me a dose of the drug Toradol.  Toradol has never worked for me and with the intensity of the pain I was in, it was as if they again weren’t listening to me or reading my file.  Immediately after the blood work and administration of medication, a Male Technician then performed an EKG test on me while I was on the gurney.

The EKG Test which won’t Wash Off

The Male Technician had to stick several sticky “connector” pads onto my body mostly around my heart so that he could obtain a reliable EKG reading.  He then applied some type of “paste” or glue which I imagine acts as the conductor.  He was polite and did not hurt me at all but when he was done he had left AT LEAST SIX (6) sticky “connector” pads glued to my torso and back AND the paste/glue was never wiped off my chest so it solidified and became entangled with my chest hair.  I now had Glue Soup on my Chest and was perplexed at how sloppy his work was.  Was his interpretation of the result just as sloppy?  I wondered.  I know it is a relatively small detail but after showering 7 times since Tuesday, I had to shave off ALL MY CHEST HAIR just to get to the bottom of the Glue Soup entanglement and I am still not done because as the hair grows back the glue starts to pull again and it now hurts such that I must shave it in the morning.  Again, not a big deal but how does a Technician leave so much glue on a patient without thinking about wiping it off and completing his job?  How does a Technician affix EKG connector pads to a patient’s body and then simply leave them there after he gets his test results?  Patients are also Consumers and based on any objective scale of quality of service, that’s akin to a restaurant customer ordering soda or coffee for dessert and having it spilled on them while the Server smiles, turns around and heads to pick up his or her tip at the next table.  This little EKG sloppiness was indicative of my entire horrific evening at this hospital’s emergency room.

Trying to get “Treated” in the Emergency Room – What does that mean?

Whenever I caught a glimpse of Wonder Nurse, I tried to explain to her that I am NOT comfortable and she, again, in the most patronizing manner said she will communicate that to the doctor and he will take care of it.  Another 90 minutes went by and NOTHING HAPPENED – no Nurse, no Doctor – NOTHING.  I think they took me for an x-ray during this period of time and then dumped me back on the gurney beneath the “Jungleland” Exit sign.  Trying to divert my attention, I made believe I was writing the song “Jungleland” and the lyrics were coming to me out of thin air

“Outside the streets on fire in a real death waltz
Between flesh and what’s fantasy and the poets down here
Don’t write nothing at all, they just stand back and let it all be
And in the quick of the night they reach for their moment
And try to make an honest stand but they wind up wounded, not even dead
Tonight in Jungleland”

Lyrics/Music © Bruce Springsteen

After I hummed the phase, “tonight in jungleland,” that’s when I CALLED MY NJ Pulmonologist and explained to her that “this medication was not helping me and I’m being ignored.  Moreover, I feel as if they all think I’m here seeking drugs when I am here because you told me to come here if the symptoms get worse.  Yet, I have, and they are doing nothing about it.”

It was a frustrating conversation because I was in pain and annoyed yet I have great respect for this doctor.  She then said there’s only so much she can do because she is not there and there was no way the ER doctor was going to start giving me Cytoxan so what did I want done?  I thought about her answer and realized that even the best of ER doctors is not trained to “treat” me or my complex condition in the ER.  They are trained to deal with life-threatening or painful situations so they could patch up patients for the purposes of getting them healthy enough to leave and see their specialty doctors.  But I still couldn’t breathe very well and was in severe pain so I didn’t know where else to go.  I didn’t even know what to ask my doctor to do for me because I had come to the ER almost on automatic pilot based on the recommendation of my NYC Crohn’s doctor and also on the overriding opinion of the NJ pulmonologist yet she now was both confused and powerless although I’m sure she felt bad for me.   I have a great deal of experience with these types of medical/ER situations but I can’t even imagine what someone without Health Insurance goes through when they decide to come to the ER.  In any event, I then decided to just ask her to do whatever she could to help me – whatever that meant – and then I conveyed my appreciation for any assistance she could offer.  It was at that moment I began thinking that going to the ER was a big mistake.  But, again, where else should I have done?  Rhetorical.  Maybe Wonder Nurse knows.

HIPAA Patient Privacy Rules in the ER

Another hour or so went by while I moaned and groaned and everybody watched me lie there like a dog who had just been hit by a car because there were no curtains or even attempts to afford me ANY privacy.  Under HIPAA Patient Privacy rules, ERs are afforded greater latitude in blurring the lines between Patient Privacy and providing Public Healthcare because it is very “situational” and they must do the best they can with what they are presented with and it’s better to save lives and treat more people than it is to possibly violate some technical HIPAA Privacy laws.  I “get” that but such latitude is only afforded to the ER when Patient Care is actually being given.  In my situation, I was being patronized and ignored.  I suspected the flat x-ray did not show much but that is not uncommon with BOOP and it is EXACTLY what happened to me in 2011 which is why they had to operate on me to see for themselves, just how bad it was.  I tried to communicate this to ANY nurse or doctor who would pass by but they just kept on walking as if I were a piece of toxic waste lying on a gurney waiting for the Disposal Service to pick me up.  That damn neon Exit sign was broadcasting my emotions like a 1970s Peter Lemongello Mood Ring.

The ER Doctor returns – and this time with Attitude

The ER Doctor came back after approximately 50 doctors and nurses passed me by during the previous 2 hours or so without uttering a word.   He obviously had seen my x-ray and consulted with Wonder Nurse about my muscular diagnosis because this time he brought an attitude with me.  It was as if he had introduced himself to me as Mary Tyler Moore but had come back as “Maude.”  I wonder if he knew had he hugged me that the EKG glue would have bound us together like Matt Damon and Greg Kinnear in the Farrelly Flick, “Stuck on You ?”  Come to think of it, I should have hugged him and thanked him for the Toradol just so he’d have to shave all his chest hair for 1 week straight!  Anyway, in my own ROOM, I could defuse this apparent situation-in-the-making but lying on gurney beneath an Exit sign while other medical professionals were laughing at me under their breathe, well, this was going to be a challenge.  It was almost as if he suspected something about me and something, or someone, confirmed that suspicion.

I initiated the conversation and conveyed to him that he had previously said he would make me “comfortable” but whatever he gave me did not work “and for the past 2-3 hours I have been lying here moaning and groaning in pain.”  While I did not ask specifically for narcotics, he said there was no way he was giving me narcotics for muscular back pain and that there is NOTHING WRONG WITH ME.  He carefully and loudly annunciated that there was “NOTHING WRONG WITH ME.”  His attempt to belittle me was as subtle as Maxwell Smart testing a listening device planted on the tip of his nose.  I ignored his unprofessional behavior to try and get to the matter at hand, which was TREATING ME, and asked him if he spoke to my pulmonologist on staff at the hospital and if he was familiar with my diagnosis and my 2011 similar diagnosis of BOOP which required chemotherapy.  He didn’t answer almost as if to purposely try to embarrass me in front on MANY PEOPLE, since I had absolutely no privacy and this included Health Care Providers, fellow patients and their families, and then he simply reiterated that all he could do was give me muscle relaxers. I again asked him if was familiar with my BOOP diagnosis and he said he spoke to my doctor and it is no big deal and there is nothing he will do for me.  I then tried to demonstrate how difficult it was for me to breathe but his interest in my breathing patterns were similar to my interest in his.

The STIGMA of Pain Management

I then explained to him how painful BOOP and Pleurisy can be and that in 2011 it was so bad that I had a Pain Management Doctor treat me.  The SECOND that phrase “Pain Management Doctor” rolled off my tongue he whipped out his cell phone as if he had been waiting to hear a prompting secret phrase about Richie Sambora from a cheesy FM Rock Station giving away “Bon Jovi” Concert Tickets so he could call into the radio station for concert tickets and he said something to the effect of: “Really, I want his name and I am going to call him right now.”  In front of MANY people, this ER doctor was trying to threaten me with some type of exposure for being what is referred to as a “Drug Seeker,” which is a patient who goes to ERs just in search of narcotic pain medications to get high.  It then hit me that being labeled a “Drug Seeker” was what had happened to me ever since Wonder Nurse “diagnosed” me with muscular pain because according to her she was able to “replicate the pain on touch.”  I told the ER doctor to please put the phone down because I can do him one better in that I saw that Pain Management Doctor earlier in the day and he actually gave me a prescription for Oxycodone.  Strangely, the doctor then said, and asked me, the following: “I want to see that prescription bottle right now and why haven’t you taken any if you are in so much pain?

Standing up for your Rights as a Patient, Consumer and Human Being

Again, I had an audience of many people and I could barely breathe but I was laughing at his ridiculous suggestion that I would take my own narcotics in an ER before I was diagnosed by a doctor in that ER.  I then tried to remember where I had put the prescription (I had come in with a Knapsack as I thought I might be admitted) and then I found it, showed it to him and also conveyed the above statement that I would never take narcotics prescribed for me to take AFTER I LEAVE the hospital – if I needed them – while I was in the ER under the care of another physician.  My ethical intent notwithstanding, after looking at the prescription bottle the ER doctor started walking away and I asked him to, “Please stop because by walking away I am assuming you are done treating me.  If that is the case, then I have wasted 5-7 hours of my time and I want this Intravenous Line REMOVED ASAP so I can leave.”  He kept going but not before I told him I want his name so I can file a complaint as both a Patient and a Consumer.  He said it would be on the Discharge Papers. Then a few nurses kindly nodded and indicated they would facilitate removal of the IV.  I waited approximately 20 minutes and nothing happened.  I then asked at least Five (5) different Health Care Professionals to help remove my IV and not one even looked at me.  I felt like a pariah who was somehow guilty of something, yet I still couldn’t breathe and was still in severe pain.  But that is no time for a pity party as a patient must stand up for him or her self even though it’s very hard to do when you are so physically compromised.

The Extreme Measure of Removing my Own IV

After a few minutes of taking in how bizarre this experience had been, I “announced” to the significant number of health care professionals walking in and around my Exit Sign, or Room area, that I was going to take out the IV line myself and would greatly appreciate if someone would simply provide me with some gauze pads and a Band-Aid.  I was tethered to my gurney because of the IV line so I was unable to access any such supplies.  No-one even looked at me.   I waited another 5 minutes to see if perhaps they would send over the Charge Nurse or even Security but NOTHING HAPPENED.  Then a very kind Male Nurse placed some gauze on my gurney along with a Band-Aid and told me he couldn’t physically touch me because I was doing something I am not permitted to do under hospital policy and he advised me I should wait for my nurse to remove the IV but he understood why I needed this material. I found his “participation”  interesting for two (2) reasons:  1. Wonder Nurse had somehow made it to my gurney to drop off my Discharge Papers but yet did not offer to take out my Intravenous line; and 2. Given that I was being ignored by everyone else, why didn’t this male nurse go one step further and stick up for me and try to have the IV properly taken out by him or by someone else?

Perhaps that is presumptuous of me because I did truly appreciate his act of pure kindness but I imagine the overriding rules of the ER prevented him from taking care of me since I was Wonder Nurse’s patient.   But I had a better chance of Bruce Springsteen coming into the ER specifically to remove my IV than I did of Wonder Nurse helping me in any way whatsoever.  It was like a lost episode of the Twilight Zone which in a strange way made me think Mr. Springsteen might literally appear.  It was as if whatever I needed or wanted I was not going to get in THAT ER.  I then carefully removed the IV but since I am NOT a medical professional, blood started spurting all over the place and it may have even hit the ceiling.  But, I knew how to stop the bleeding and did so and placed the Band-Aid on the bloody wound.   That same kind male nurse told me that I should use the restroom to freshen up as I had blood all over me.  I thanked him.  The wound is pictured above (albeit 2 days later to highlight the bruising)  and I can confidently say that had the IV been taken out the way it was supposed to be removed, I would not be at all black-and-blue.

Interlude – When your Frustration gets the best of you – APOLOGIZE

Incidentally, this was the same male nurse who correctly chastised me hours earlier for cursing on my cell phone when I was improperly venting my frustration to my Mom when she called me in the middle of this fiasco.  It was the 2nd night of Passover and I missed my family and my anxiety turned into intense frustration from the way I perceived I was being mistreated in the ER.  I was trying my best to be polite to everyone in the ER, even Wonder Nurse, but the increasing hopelessness of the situation and my fear of what I was to do if they couldn’t help me in the ER, got the better of me along with the aggressiveness which comes along with being on 60 MGs of Prednisone for 10 days.  Thus, all I could do was apologize to this male nurse and stop cursing.  I did that, I feel bad about it, but it happened while I was out in the hallway under that Exit Sign, on a gurney all alone, not being able to breathe very well and often in severe pain.  It’s not an excuse because there were families all around.  I am just trying to provide context for what was inappropriate behavior by me. I never cursed at ANYONE in particular and all of my profanity was “frustration-based” and not at all directed any person.  To the credit of the male nurse, he accepted my apology and hours later when I needed help with the IV, it was HE who help me.

You must delete the Pictures of your “Room” in the ER!

I then thanked the male nurse for the gauze and Band-Aids, used my phone to take some pictures of my “ER Room,” being extra careful to NOT photograph anything or anyone that could be identified as the Hospital, the ER or as any Person.  I respect people’s right to privacy and I wasn’t looking to embarrass the hospital, the ER of its staff.  I just wanted to get a picture of the “Room” I was kept in at the ER while they treated me like a Drug-Seeking Animal.  I then went to the bathroom to freshen up and when I got out of the bathroom and headed back to the gurney, there were two (2) Security Guards standing in and around my palatial ER “Room” demanding that I delete all pictures I took with my cell phone. I initially told them, “No,” but the main security person seemed to be very reasonable so I decided to explain my intent and offered for him to LOOK at the pictures on my phone and I said I would delete whatever he thought was contrary to hospital policy unless I disagreed with his interpretation of that policy.  Before I could engage with him, however, his colleague was too aggressive for my tastes when he tried to “grab” the phone from me so he could impose his will on me and my cell phone.  Having just pulled out my IV by myself, the sight of blood didn’t scare me so I pulled the phone back from him as I looked him directly in the eye and said, “I am trying to cooperate here so please don’t make this a scene.  I have offered to reasonably cooperate so either get your hands off my phone or I will keep all the pictures.”  His partner calmed him down and I got back my phone.

The calmer and Head Security Guard starting explaining to me the hospital has a policy of no pictures and as a trained attorney I asked him for proof of that policy. While he sent someone to get it, I did exactly what I said I’d do and politely showed HIM every picture, including the above Exit Sign which denoted my very special place in the hallway. He respectfully requested that I delete EVERY picture and I told him I would only delete pictures which identified the hospital and there were no pictures of people since I would never even do that.  But because he was so nice, I told him I would delete all of them EXCEPT the Exit Sign.  He wasn’t happy but at least we settled our dispute in a quick and amicable fashion.  The other security guard is still looking for the hospital’s policy on no pictures.  Then the Security Guard began escorting me out of the ER and we had a pleasant conversation the entire time, although I still had pain and problems breathing as I walked.

Illegible Discharge Instructions – I wanted ER Doctor’s NAME

On the way out of the ER, I told the Security Guard I wanted a legible printing of the ER doctor’s name and he brought me to the Charge Nurse.  This particular Charge Nurse had just gotten on shift and said the doctor’s name is on the Discharge Instructions.  I told him it was NOT, or if it was, it was “coded” so that hospital personnel knew who treated me but I would have NO IDEA.  Therefore, I wanted him to please print it legibly for me.  At first he just printed the last name and because it was a foreign name I was unsure whether I had the first or last name so I asked for the full name.  For some reason, this Charge Nurse took issue with that but I persisted and he gave it to me.  What is the big secret about getting the name of the ER doctor who treated me and charged me money for that treatment?   I just looked at the Discharge Instructions again and now that I know his full name I see that the first initial of his first name and then his last name is printed next to “Attending” in the upper-right-hand-corner of the Discharge Instructions.  How in the world would I have been able to decipher that code? Clearly, this methodology of  “transparency” is  not that at all and is simply a way for the hospital to keep track of which doctor treated me – just in case.  That policy MUST CHANGE and Patients must demand that it change.   When you get your hair cut, don’t you know the NAME of the hair stylist?  Then I asked him to identify the Charge Nurse who had been on duty during my ordeal and he gave that to me as well.  I wanted that person’s name because in my experience he or she should have come over to at least investigate what was going on with me, if not to help me, beneath that neon Exit Sign in the hallway.

What’s next after Emergency Room – who do you see when the ER doesn’t help?

When I left the hospital and got to my car, I started crying.  I didn’t know what to do next and I felt as if I had no one to turn to.  Besides my immediate symptoms, I was worried about what was going to happen going forward as that 2011 episode of BOOP is still so fresh in my mind.  Then I got angry and that was most likely due to the Prednisone because I am NOT an angry person.  I’ll admit to being in Pain and Scared but Angry I am not.  I am frustrated at times but always POSITIVE.  I knew I needed to talk to a friend and thankfully I have several of them and this particular person just listened to me describe what I had just experienced and how scared I was of what was going to happen to me next.  It felt good to “unload” all of this information, I also shared it with a fellow Patient Advocate who I have great admiration for and her compassionate response also made me feel better.  But I could not sleep and I started to think I was going to have to wait until my follow-up appointment next Tuesday to speak with my NJ Pulmonologist, and whatever might happen to me before then, was just going to happen.

Don’t WIN the ER Battle & LOSE the Treatment War

At approximately 11 AM on Wednesday (the very next day), I received a phone call from my NJ Pulmonologist’s office telling me I had a Wednesday, 3 PM appointment with her.  I was puzzled as I never made that appointment.  This office person told me it was in the Discharge Instructions.  I double-checked, it is not.  Regardless, I needed help so I went to see her.  She could not have been nicer or more compassionate and I chose to use my time with her to focus on getting me better.  My experience in her ER really had nothing to do with her and any time I spent belaboring that point was wasting time that could be used helping me get better.  This is important for other patients to understand because you might win the ER battle, but lose the Treatment war.  This is also why you must choose your battles carefully.  The ER is by necessity a tough place in a world of “love em’ and leave em'” medicine.  But when you are in your doctor’s office, focus on what’s really important; YOU.

The Battle was how badly I was mistreated in the ER; the War was getting me better from the BOOP.  My doctor really had nothing to do with the battle and given how complicated my case is, conceivably only Wonder Nurse could have helped me.  🙂  I did, however, point out how I resented being labeled a “Drug Seeker” when the ER doctor CLEARLY knew NOTHING about me or my situation and he had completely misunderstood whatever she had told him.  To my surprise, my NJ Pulmonologist told me I was right and then we moved on.

Patient Input alongside Science & Medical Experience

She concluded after 10+ days of observing me that the Prednisone is NOT helping me and she began decreasing it AND she informed me she would be  “scoping” my lungs on Friday.  Not that she wasn’t “listening” to me before, but when we SPOKE on the phone in the ER I had commented that at some point my patient input has to start counting for more because I’ve lived this BOOP fiasco in 2011 and I don’t care to re-live it, if that were at all possible.  I think that made her shift a bit in making room for my patient input amongst her scientific mind and medical experience.  It’s a difficult journey for an experienced patient and smart doctor to go through together but science hasn’t yet evolved to the point where patient input is irrelevant and I was glad to see how adaptive my doctor is as she pivoted her approach a bit.

Post Friday’s Bronchoscopy

I had the Bronchoscopy on Friday under General Anesthesia.  In 2011 I could not have this endoscopic procedure because the doctors thought my lungs were too far gone to substantiate its risks.  The test went well and the doctor excised a number of biopsies but she is concerned.  She is concerned because BOOP is microscopic and while we are waiting on Pathology Reports she might have to also facilitate an operation on my lungs so she can take larger biopsies.  She’s just being thorough so that when and if she decides to administer some type of Treatment Drug, it is the safest one best suited to healing my lungs.  A patient can’t possibly expect to get such treatment in an emergency room BUT sometimes symptoms get so bad that staying at home seems dangerous.  I am accustomed to making such decisions with my Crohn’s Disease when the prospect of a perforated bowel is the touchstone for grabbing that medical “go bag” and heading to the hospital.  But with my lungs, I guess it’s a different standard. Again, the amount of Prednisone I am on could also get me VERY SICK so I’m simply trying to be true to myself and also follow the directions given to me by doctors.  I think my NJ Pulmonologist finally gets that and she finally gets me.  I can’t ask for more unless Wonder Nurse can see through my lungs.  🙂

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MAW PPP Dec 21 2012