Patient Trauma; A Standard Visit to the Hospital in America.

This is the account of my five-day stay at the University of New Mexico hospital in June of 2022 after my fifth Optic Neuritis attack.

I woke up that morning without warning of the attack other than a slight vision change in my right eye which already had substantial damage. My vision appeared slightly more cloudy than I remembered. The little fragments I had of clear perception in my visual field seemed diminished.

While I never have a lot of pain with my Optic Neuritis attacks, I usually have a distinct soreness, but it was not the case this time. While I debated if this was a potential attack, I tried to remain calm, but my internal alarm bells were ringing. I feared what lay ahead including the exhaustion of having to advocate for myself as well as the large doses of the drug prednisone which, for me, has the repercussion of debilitating side effects.

Leading up to the attack I had been focused on my health. In May, on a road trip, I decided to try a temporary rental in Santa Fe, New Mexico. The extra sun, warmer weather, mountains, and distance from stressors in my home state of Minnesota, seemed to be having a positive effect on my nervous system. But I was gambling living without a support system and a healthcare team in place. My undiagnosed condition and my optic neuritis attacks had stunted me more than most in the Pandemic. I just wanted to feel like I could live my life.

When this attack came I was still in the wait time to be established as a patient in New Mexico. I was a newly established patient at Mayo Phoenix, but that is seven and a half hours away by car. At this point, it would take me another five months to see a physician in New Mexico.

Because I did not have pain and sometimes my eyes can be shifty, I remained calm, but emailed my neuro-ophthalmologist at Mayo Rochester, Minnesota. While I was waiting for a response, I thought it was time to do the homework I had been avoiding.

Over the three weeks prior I had spent about twenty hours on the phone attempting to get my treatments, monthly IVIG infusions, moved to Santa Fe so I would not have to drive to Pheonix or fly to Minnesota. Based on whom I  spoke to I would be advised it could be done this way or that way. Inconsistent information and instructions not only led to me not being able to get this scheduled but compounding stress…the stress I was running across the country to hide from.

I also needed a local Ophthalmologist. In a holding pattern, I spent the next three hours on the phone while going through the Medica website to find a local provider that accepted my insurance and would schedule an appointment with me. I combed through nineteen pages of listed providers to discover that the majority of the information on the Medica website was inaccurate or out of date. When calling these clinics, the doctors often were not Ophthalmologists, nor the clinics did not have one to begin with. However, these were the clinics I was supposed to be able to go to per Medica’s website.

I eventually landed on the University of New Mexico eye clinic in Albuquerque, an hour away from my home, but it would take a referral and at least six more months to be seen.

My doctor from Rochester Mayo emailed me back in the afternoon and told me to be seen. My only option was to make the trip to the University of New Mexico hospital Emergency Room. Because it is a university hospital, there is a resident Ophthalmologist on call. The non-teaching hospitals in the area would not have this option and they would send me home and tell me to call an ophthalmologist the next business day and that ophthalmologist would make me wait months.

Luckily a new friend texted me in that stressful moment when I was about to leave and offered to drive me to the hospital. Not only was rush hour starting, but I would also have had to navigate going to a place I had never been in a state of high stress with vision issues.

I was dropped off at the ER because no visitors were allowed in. I was first searched for weapons. This a sad reflection of the state of affairs in America at the moment. I was quickly aware that being in the only level one trauma hospital in the state and inner city there was a large percentage of people in withdrawal and or looking for a fix in the ER. Note; I do not blame addicts. I see a lack of mental health support nationally as a major crisis and big pharma being a main contributor to addiction. There were several outbreaks and arguments in the waiting room. Some people were forced to leave.

Check-in came fairly quickly. When I realized the attending nurse and PA were men, I thought I was going to be facing more challenges. To be transparent I have dealt with a lot of physicians in my life and the larger percentage of ones who have disregarded what I am saying or dismissed me, are male. I prepped myself mentally for the battle of justifying that I needed help.

Before they could get the blood pressure cuff on my arm I began to explain. “I believe I am having an Optic Neuritis attack. I have a history of them. The cause is not diagnosed. I do not have MS, NMO, or MOG. I need to be examined by an Ophthalmologist as soon as possible so if I need treatment, we can save the vision I have.”

The PA immediately said he was sending a message to the on-call Ophthalmology resident and ordering an MRI proactively. I thanked the men for listening to me and believing me. After I stepped out into the chaos of the waiting area I realized that my directness and my ability to speak about my situation and needs was probably a relief for the staff. Trying to avoid those who were showing signs of anger or persons coming in the ER for a COVID test, I sat in the corner near the front door shivering for several hours.

After eleven hours in that waiting room, I saw the Ophthalmologist. I explained my history and gave her the after-hours phone number for my clinic at the Mayo. I explained that I had standing orders for plasmapheresis because I had such bad reactions to Prednisone. By this point my nervous system was on overload, PTSD was kicking in and the tears just formed. My voice cracked as I told the doctor after having no history of depression, that I had suicidal fantasies at the half-life of prednisone each day while  I was on it. The doctor thanked me for being totally forthcoming. I was sent back to the waiting room.

I want to pause here and talk about my trauma for people who have not experienced what I call patient trauma. Here are some of the ways I have been traumatized my our medical system. I have had two spinal taps I questioned beforehand that were then deemed obsolete. I have been scolded by two doctors from the University of Minnesota for advocating for testing. One of whom scheduled a “follow-up” appointment to specifically tell me off while I was home alone in isolation on prednisone. This doctor did not use the appointment to actually check on me when my mental health was already unstable.

I have been bullied into excessive testing that I had to pay for. I was pressured for months to take multiple sclerosis drugs when I was not diagnosed. My mental state has been questioned when I have been asking for help with my health. My medical insurance has tried to incorrectly bill me for tens of thousands of dollars of claims I had to fight. When I told my doctor that after having no psychiatric history that I was having daily lucid suicidal fantasies at the half-life of my dose of prednisone each day he told me I “should not be feeling that way,” rather than accepting that I know how I felt.

These are just some of my experiences. The result is that when I enter a clinic or hospital setting, my nervous system lights up. I go into fight or flight on autopilot. Everything from the smells to the dings of machines feels intolerable. I become immediately sad and feel defeated.

Hours after having an MRI and talking to a neurologist, I was admitted and brought into a bed in the hall of the ER in the very early hours of the morning. I was close to the main station and directly under a fluorescent light. The following criticisms I have are not a reflection of the staff, but of the upper-level hands that control the for-profit system that benefits the pockets of a privileged few. It is a criticism of those who abuse the system. The hospital is over capacity, understaffed, and under-supplied. I admit that I am coming from the perspective of a Mayo patient which is a total privilege.

I had a travel nurse who put in an IV, gave me a shot, drew blood, and hooked me up to the vital machine. I asked for water, and she disappeared. I never got water and my vital machine dinged non-stop as I drifted in and out of sleep. Different people came to draw more blood with no explanation.

No one could tell me why they were taking more blood or would stop the machine. Finally, one man stopped and without explanation shoved his hands down my shirt, sticking the EKG pads to my body. I felt that I was a number and not a person as he exposed my breasts without warning. The dinging stopped and he was gone.

Eventually, a female neurologist put the team in place to start plasmapheresis. This required a PICC line to be put into my chest. It runs up my chest and into a vein in my neck. I was awake for the procedure but had drugs in an IV. The all-female team rocked it. I felt nothing but the pinch of the local anesthetic. They told me I was a rockstar and brought me back to the ER hall. I went on asking for the seventh time for some water. This time I got it, but received no food.

In the late afternoon, I was moved into an ER room where Tina, my super amazing nurse, came to do plasmapheresis. Tina and the doctors that set up the procedures were very thorough in walking me through everything.

For two hours I was hooked up to the machine.  Essentially it pulled all my blood out, taking my plasma out of the blood, and replacing it with other plasma. The idea is to get my own antibodies that are attacking my eye out of my body.

After the plasmapheresis was done, Tina left, and my friend Christine brought me some fast food because I was not given any food in the hospital. I happily gulped a chocolate shake. As I finally began to relax over 24 hours in and was drifting off when a nurse appeared and said I needed to get ready to be transported. I asked her if I was finally going to a room in the main hospital and she said yes.

Well, turns out that was a lie. I was moved to a different hallway in the ER. One supposedly in a quieter part of the hospital. But I was next to a station of night nurses who had a TV on and chatted nonstop about their lives outside of the hospital. I will say the supervising nurse is to blame for this crew. I am sure they are sick of working, but no one showed me my call light, which had fallen under my bed. If I needed something, I had to unhook myself and get up. By this time the local had worn off on my chest and even though I had a painkiller it was very painful to move. My bed did not elevate at all, so I had to sit myself up to get up, and I was in a lot of pain.

Again, my vital machine would ding relentlessly, and no one would come. The bed automatically inflating and deflating at random intervals to prevent bed sores was just another of the many factors keeping me awake.

I eventually drifted off, into a lucid state, all the dinging and chatter intermingling with my dreams of not being in the hospital. This would last a few minutes and then I would remember I was in fact there.

Just before 4:00 AM, per my regular schedule, I was awakened for a shot, for blood to be drawn, and to be given a much-needed painkiller. I drifted until my neurologist unhinged the thin beige curtains, my only protection from the outside world, kept closed by one slightly bent safety pin.

My neurologist’s first question was if I had been given meals since she had put in orders for them the afternoon before. The answer was no. She then asked if I had any dietary needs. I told her I avoided gluten. She said she would adjust orders. All the food I recieved came on a piece for bread or a biscuit.

Later, my neurologist came back with two additional doctors who were upset I was still not in a room and advised that I ask for the supervising nurse to get help. At this juncture, and after two pretty much sleepless nights, I did not have anything in me to fight this. After a second request by my doctor to get a call button the nurse finally showed us that it was hiding under the bed.

After they left, I got up and went to the nurses’ station to ask for food. I told them I had not been given any food by the hospital for the last 17 hours. I was offered some cereal, but a nurse came back with a small sandwich.

A few hours later the safety pin that held the curtain closed around my bed unhinged again, and a smiling face popped in. The woman informed me she was my new nurse and she placed fresh water next to me and she informed me transport would be coming to take to a room. I didn’t hold my breath and I felt that a really good nurse had just shown up a little too late.

Soon I was on my way up and admitted to the Neuroscience floor. This means I was with patients who were suffering from things like strokes and late-stage dementia. This also meant I was the only patient on the floor who was capable of walking around and talking. The man who transported me to Neuroscience bolted off to find me a pillow upon arrival as in his own words pillows were scarce.

I was brought lunch that I would not classify as edible, but my friend Christine returned with hot coffee and some breakfast items. In these instances, it is not just the food that is imperative to your health, it is the in-person contact of someone you know and getting care that is non-existent in American hospitals.

Marguerite, my new nurse in the neuroscience unit took one look at me and shook her head as I was still in my street clothes. She didn’t understand why I was not in a gown and told me to immediately put on the gown she handed me. It was ripped and stained. Can I comment on the humiliation of having to wear something that is not only totally unflattering and a non-functional garment made of a stiff fabric and smells of bleach, but it also was ripped offering no privacy but was stained with somebody else’s fluids? I kept my tank and sweatpants on underneath and listened to my no-bullshit nurse.

At this point about 43 hours in, I had not been bathed in any way. There was no towel and no washcloth in the bathroom, so I wiped myself with paper towels and brushed my hair and teeth.

The staff on my floor was awesome, but from what I could see, they were over capacity, needed more employees, and lacked supplies, and support coming from the top down. Things that could be overlooked would be. The trays from the last three or four meals would just pile up because no one had time to take them away.

At one point Marguerite thanked me when I brought my own water pitcher to the station to be filled versus using my call button. I was there in the event my vision declined and there could be intervention versus starting the process over. The other reason I was stuck there was because there was not enough time before the weekend to get in the pre-authorization for outpatient plasma exchange. I would have to wait until Monday for my next treatment and hope the powers that be would not only approve me for outpatient, but the outpatient facility would have the capacity to schedule me.

I felt like I was taking up unnecessary space and resources, but there was nothing else to do, but hope and wait and not get any rest.

Shortly after I arrived in the neuroscience unit, I had gotten a roommate who had just had a second stroke. She seemed to be in a lucid state of despair and would say things over and over like, “for god’s sake, someone please help me.” This was the only time I used my nurse call button. A male voice came over an intercom asking what I wanted as he knew I was fully functional.

I tried to articulate that I needed guidance on if and when I should alert the nursing staff to my roommate’s discomfort. He came in the room to ask me again what I wanted and after I explained he walked behind the curtain that separated me and the other patient and spoke to her and left. I never saw this provider again and I had no idea what to do.

However, soon this patient was moved, and I prayed to somewhere she would be more comfortable. However, terror awoke in me as I had no idea what or who was coming next. 

Yet somehow, I was awarded a miracle and no roommate came that night nor did one appear for about thirty-six hours. Despite having books, a sketch pad, the liberty to walk the hospital, and had dozens of friends calling to check in on me, this was the longest day of my life. The relentless dinging of vital machines, the smell of bleach in my bedding, the disinfectant in the air and the lack of anything comforting in my immediate surroundings started to erode me. I still had not bathed.

I arrived on Thursday, had treatment on Friday and early afternoon on Saturday an ophthalmologist appeared. I had begun to have better color perception and light sensitivity since the treatment so I was optimistic.

I managed two almost seven-hour nights of sleep with the aid of Ambien, melatonin, ear plugs, and sheer exhaustion. As is standard, every morning I was awakened just before 4:00 AM for a shot, blood draw, and vitals.

By Monday morning my sense of humor was leaving me, I was antsy as hell, unbathed, and my edible food supply was diminishing. I managed to find a veggie salad the size of a cereal bowl for $18 in the hospital cafeteria. I swallowed the cost knowing this may affect my ability to have a bowel movement in the near future.

Four doctors appeared at the end of my bed late Monday morning with no new updates. Each doctor of course was hopeful and told me they were going to figure this out. If only. In my patient career I have had at least half a dozen doctors swear they were going to work through this with me until a few weeks or months later when they give up and refer me to someone else and I start over.

These doctors still did not know if I would go to outpatient or if I would be in the hospital for another week. I was silent because if I opened my mouth I would have bawled hysterically at this prospect.

Around 1:30 PM Monday, Sarah, my new plasmapheresis nurse arrived to bring the machine that resembles a small Zamboni to suck all my blood and put it back in again, She informed me that I would be seeing her on Wednesday outpatient. My response was to question her as I was in disbelief that this twenty-something-year-old sweet person would be the one to set me free. I asked her three times to confirm I would be getting out.

She informed me that discharge would begin an hour after my plasma exchange provided my doctors didn’t have any further orders. Two hours after that I was on the road leaving one of the most difficult experiences of my life behind me…almost.

I had my first shower in five days which required me to cover up my PICC line. When I looked at my bare body in the mirror I was covered in bruises from needles and patches of left-over glue from dozens of things taped to me. I was incapable of scrubbing them off.

After eleven and a half hours of sleep, I woke up to start the follow-up process. This morning I spent four hours on the phone between clinics and doctors trying to get records shared, post-care appointments, and imperative tests. I was not successful, but I advocated for my needs in every avenue I could think of and exhausted every resource I had, including myself.

I will have three more plasma exchanges here and then hopefully will have this PICC removed. I will then fly home as soon as possible to go to Mayo in Rochester to determine the next treatment plan as the breakthrough attack means IVIG is not working.

I fear my body has become a cage and this once-free spirit it is grappling with the idea that my life has been taken from me. I am exhausted by the hours and dead ends in navigating this and our healthcare system. I just spent a year and had nineteen-day-long treatments that supposedly did not work. I am exhausted by this.

If you have read this, this is what I ask; if you know a person who is a patient or struggling with their health. Be gentle with them. They may feel broken, ashamed, unwanted and a burden and on top of it, they probably don’t feel well.

There are many tangible ways in which you can help a patient.  Access to good and healthy food is always a need. Taking any logistics, like transportation, is very helpful. Going out of your way to provide them a basic comfort like a good book, some flowers, or slippers gives them some hope. Just telling them that you are there or texting a funny meme can greatly improve mental health.

I ask that you thank and acknowledge nurses, techs, admins, and doctors. They are overtaxed, over capacity, are under-recognized and underpaid often by their for-profit employers.

Pay attention to the addiction epidemic that is spreading in this country. Not only are there not adequate resources for this disease that is stigmatized,  but big pharma feeds this problem for profit.

Push back. Push the fuck back on your insurance provider. You are a legally obligated customer in a for-profit industry that is regulated in a way to first protect the deep profits of the few. First and foremost, you are a customer before you are a patient. Make demands and make some noise in any platform you can.

And finally, for each and every day you feel good, squeeze your body and thank it. Look up at the sky and down at mother earth and thank it for your health. Be a steward of your own well-being and don’t waste any minute of good health you have.