I am a very bad patient. I hear most nurses are. I’ve had many caretakers make excuses for me. Nurses are controlling. They know too much. Or they do not know enough.
I always thought that my being difficult was because of my personality. I do like to be in control, specifically of my body. I am meticulous and efficient, and I don’t understand how people can live any other way. My standards are very high. I will tell you how to do your job if I feel you are not performing effectively, even if I have no idea how to do your job. And I always think I’m right.
I’m only human. I am certainly not perfect.
With this said, I am going to admit a thought process that I don’t believe a healthy person would understand, but everyone should be aware of. I read an article in Newsweek recently about young patients with chronic diseases, AIDs for example, that decide to test whether their medications are really necessary and end up dead. They used the example of two nineteen year old AIDs patients at Montefiore medical this summer. My response was “Only two?”
I remember the teenage dead AIDs patients from my nursing rotations years ago. I remember the song and dance we would do as health care providers trying to revive bodies we knew were dead, but either couldn’t let go or needed the practice to revive others. It’s morbid, but it is better to practice on a child that has no chance of survival on arrival than a 60 year old heart attack patient that may survive twenty more years. It’s what they medical world calls a “slow code.”
I remember our discussions afterwards. Disbelief. How could they have stopped taking their medications? How could they have played russian roullette with their lives? How adolescent to test the boundaries of their diseases and die. What the hell were they thinking? I would always go home depressed.
I’m going to tell you exactly what they were thinking.
I knew my potassium was low. My practitioner had called to inform me I needed to be supplemented on Friday. I ignored her phone call. I told myself I was done being sick. I told myself my body could fix itself. My brain challenged my body and the challenge was on.
Potassium controls the influx of the electrical impulses necessary to control your heart beat. Too much or too little causes cardiac arrhythmias. Prior to my illness, my coworkers and I would discuss methods of suicide. K+ overdose was always popular.
I knew exactly the ramifications of refusing to take my potassium. I did it anyway. I was not trying to kill myself, but I was not trying to live a long healthy life either. I was wondering, if my body can not survive without these medications, was I really alive? And if I knowingly refused to take the medications to sustain my life, was I committing suicide? I decided I was not. I was taking control of my illness, and allowing the cards to fall where they may.
My heart started misbehaving at the bar. I had decided I was going to be a normal fun twenty-six year old. I’d been to an adult toy party in Unity. I’d been to a Battle of the Bands for ALS research (Peace to Steve Meersman), and I had moved on to the bar for some munchies.
Suddenly, I couldn’t think. I couldn’t calculate the tip. I thought I had overdosed myself. I thought I’d gone on a bender and couldn’t handle the combination. Then I thought I was having an anxiety attack. Then I thought my heart was about to explode.
“SHIT! I changed my mind!” I thought. I made a very bad decision. I don’t want to die. I killed myself. I’m going to hell. I’m a bad person. Call a priest. Breathe. Why can’t I feel the air moving. I can’t think.
My cousin raced me to the hospital. She called in advance, but didn’t mention my name. I think the ER was hoping for an anxiety attack, but unfortunately, they got me at the door. High off my ass from party time and in super ventricular tachycardia.
I couldn’t focus. I racked my brain for a reason to survive. What was my motivation to live? My mind drew a blank. I’d used all my good reasons before. I couldn’t take the pain anymore. My family would survive without me. I could no longer do the things I enjoyed. I would be disabled for life. I had nothing left to contribute to society. I was a drain on the system. If I could just focus.
“Potassium” I gasped, “Couldn’t take.” Breathe. “Low.”
“Have you ever had adenosine before, Hillary?” the doctor asked.
“What?! No! I don’t want adenosine!” I shrieked. Now I was really being punished. God must be trying to make his point very clear I raged. No person in their right mind who knew how adenosine worked would want it in their body.
Taking adenosine is somewhat like restarting a computer after installing software. To have your computer run the program correctly, it needs to be shut down and restarted. To have my heart slow down and beat properly, adenosine would shut it down for six seconds, and then my heart would restart at a normal rate.
Six seconds is a long time for my heart not to beat.
It’s all fun and games when I was giving it to someone else, when it was somebody else’s heart I was playing with, but my own, absolutely not.
I wanted to tell them that I had known about my potassium. I wanted to confess that someone with my education who knowingly refused to take supplementation and almost sent themselves into cardiac arrest should not be given an opinion, they should be strapped to the stretcher, gagged, and forcibly treated. I didn’t. I decided I’d ask for a prescription for anti-depressants later. Anyone who was in my position and was not depressed was crazy I thought.
If this was the only conflict while I was in the ER, I might have left with my dignity intact, but this was just the start.
The ER opted for lopressor, which was not so scary, and K+ replacement.
Since I was previously employed in this exact ER, I was blessed to know the staff, who I enjoy very much. However, I was on a bender. I did intend on going home and getting some play from my husband afterwards. I had gotten dressed up for the occasion. Imagine their surprise when they go to strip me for my EKG only to find me in my whore underwear. I was told they would just work around my dress for tests by a group of red faced men.
Then, my blabbering self couldn’t remember my medications, and when my purse was searched to review my prescriptions Heather decided to use the penis pencil I had received at the sex toy party, biting the tip whenever she became nervous or frustrated, to fill out my paperwork.
I forgot to tell the IV nurse tegaderm tears my skin off until after the IV was dressed. I think I need to tattoo the information on my forearms, right below each antecubital .
I was cold and couldn’t control my shaking, which I thought was hysterical. I informed my family and the medical staff that I should be called “twitchells.”
I refused the ativan, which for most people descreases anxiety, but for me causes amnesia. It also increases the likelihood that I’ll become a feisty bitch with no boundaries. All bets are off when that stuff gets in my system.
My husband showed up and I insisted on referring to him as Joe Black, from the 1992 movie with Brad Pitt as an emotionless death incarnate, because I kept forgetting he was there until he popped into my line of vision.
I told my mom she was going to give me an anxiety attack when she came rushing to the ER and kicked her out.
Meanwhile, I thought I was a hysterical one women party, and would not stop laughing. I told the EMT that the nightlife in Claremont sucked, and I was there to get back to Boston as soon as possible. I’m not sure if she understood my joke.
Conveniently, I was the only patient that evening, and since I was a previous employee, the staff treated me like gold despite my misbehaviors. It was a quick trip, but I never did admit I knowingly refused to take my K+.
Being a non-compliant patient is not a risk I am willing to take again, but from my experience I can only surmise that each of those AIDs patients had knowingly decided to take control of their illness. They gambled and lost. I do not believe that their death was the cause of an adolescent immortality complex. I also believe that if I felt the way I did, with a disease that I can acknowledge in public, with a disease that everyone sympathizes with, a disease that does not come with a scarlet letter, then the impulse for AIDs patients to test death is more overwhelming. I’ve seen two hundred patients in one twelve hour shift in an area of the Bronx where the HIV infection rate is one in three. No one has ever admitted to me they had HIV.
I hope health care professionals can read this confessional and understand where I as a patient, and others like me, are coming from. We often risk our lives and suffer in treatment without results, stopping our medications is not an act of defiance and stupidity. It’s an act of independence. It’s a personal choice.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."