By Sami Jankins
Editor’s Note: This article was originally published on Chronicality.com.
My declaration is not the first time this problem has been pointed out, but regardless of that, the medical system is broken. I have spent my entire life in the ranks of doctors and nurses and wandering the hospital halls. I’m a proactive patient. I’ve learned to take care of myself. I have learned my limits. I no longer extend myself beyond my medical capabilities, even though I’d like to live the normal life of a 20-something. I realize this isn’t possible. I take all of my medications on time. I carry a list of all of my allergies and medications with me along with the precise time of when I take them. This list is always perfectly up to date. I go to all of my follow-up appointments. I’ve learned to organize my appointments for efficiency by providing my doctors a list of questions and concerns at the beginning of the appointment so they know what medical issues need to be addressed. I have done my work. I have kept up my end of the bargain. Now let me share my insight on how the medical system has failed me.
Medication errors are more common than you might think.
When I’m in pain, it is pretty much without fail that once per year, morphine or some other medication I’m allergic to will make it into my hospital or ER room, despite the fact that it is on my allergy list. Almost every visit someone tries to give me ibuprofen or another NSAID. I’m on massive amounts of blood thinners, so this is highly contraindicated for me. It’s not uncommon that someone would be on blood thinners, and there’s no excuse for physicians to even bring these medications up as possibilities for me.
I wish health systems would learn to communicate with one another.
Most of my doctors cannot directly admit me to the hospital, so I’m often forced to go through the ER. This past year I made it all the way to being admitted without anyone having a clue of why I was admitted in the first place. My primary care doctor had noticed my blood work showed signs of sepsis. I had to explain this to the white coat posse five times before they finally pulled up the note attached to my file.
The ER is always treacherous and I try to avoid it at all costs. Luckily, there is an urgent care center nearby. Once, I contacted them in advance, just in case, to inquire if they could handle intractable migraines — those that have gone on for days unresponsive to medication. I was told the facility could handle it, but that it would be helpful if my neurologist created a protocol. My neurologist put together a treatment plan and attached it to my online chart. But when I finally presented with an intractable migraine at the urgent care center a few months later, I was informed that patients with protocol seem “suspicious.” I was following orders that their center had requested and was attempting to help in sorting through my complex medical history, but their inclination was to immediately go for the medications not on the established protocol. There’s a reason they aren’t on the protocol. Sometimes my medication list isn’t even read.
I’m not a junkie, I’ve just been a professional patient for a long, long time.
When I ask for the medication listed in my protocol, that is not me being a “junkie.” When I say what veins are better and that I need a small gauge IV, it’s because I’ve spent years in the hospital needing 15-plus sticks and anesthesiologists coming to my room to start IVs because my veins are that bad. Unfortunately, patients advocating for themselves is not always welcomed.
When I have an infection and plead that I need IV steroids due to my body’s inability to make its own due to adrenal insufficiency, which is also documented, this is not an attempt for me to get high. No one gets high off of prednisone. I had an asthma flare last summer and my insurance refused to cover any asthma medication whatsoever. I had to go on two and a half weeks of otherwise unnecessary oral prednisone following an ER, urgent care and primary care visit because my lungs kept getting worse. I’m not sure they understand what cost efficacy truly means. At the beginning of this year my insurance refused to keep me inpatient for my asthma, yet also wouldn’t cover my outpatient asthma medications. What am I supposed to do then?
Unfortunately, patients advocating for themselves is not always welcomed.
I had two severe allergic reactions to blood. The blood bank told my doctor that I would have to have another severe allergic reaction while inpatient to prove that I needed the same one unit of blood, but divided into three smaller plastic pediatric bags so I can get one unit over a longer length of time. I had that reaction and it was scary. Access to the smaller bags is still in question even though they aren’t more expensive. I will need blood again. Will I be forced to have a reaction over a battle of plastic bag size?
It can always be worse, I know.
A year and a half ago I was hospitalized in a city I had never been hospitalized in before. My family was thousands of miles away, but I was fortunate to have friends with me to advocate on my behalf. Numerous times they stopped healthcare professionals from administering incorrect medication, or tracked them from room to room when nurse call light was left unanswered for an hour while I was in the midst of having an acute allergic reaction to medication. My friend pulled a medical student out of another room because no one was attending to the anaphylaxis.
I was told my potassium levels were severely depleted. I needed an infusion urgently. The “urgent” infusion arrived five hours later. It took me three hours just to get a little water. Had my friends not been there with me, staying on top of things every moment, I can’t say I would have made it out of the hospital as intact.
All I ask is for respect from the medical community.
I don’t deserve this. No one deserves this. I understand my symptoms are frustrating and confusing. I understand that I’m an almost unsolvable puzzle so all I seem like is a liability. However, I am a person trying to function and lead as much of a salvageable life as possible. I do not need to be treated as if I’m sub-human or be expected to discuss aspects of my medical health, that in no way pertain to my current health state, with some random doctor or pack of medical students because they are curious and find me fascinating. I am not a circus freak! To the people working in the medical system: I could be your cousin, your niece or your spouse’s best friend. I am a person with real emotions that I often have to keep contained to get by in your system.
My own specialists are wonderful people struggling within a system that does not allow them to treat their patients with the time and care they know they deserve. Insurance dictates what they can prescribe as if they haven’t spent years receiving an education or have the debt to prove it. They have to put up with a loss of control over their own patient when I end up at the ER or inpatient to doctors who don’t know my case nor care to. They have to wait out other physicians unraveling years of hard work they put into getting my health stable. My own specialists are often left without a say, and no, 15 minutes isn’t enough for any physician to really provide a thorough appointment. Insurance companies need to stop holding them to ridiculous standards.
I’m not alone.
Please respect me. I know I can’t be fixed, but the medical system can be.
This is not just happening to me, it’s an epidemic in the chronic health treatment world. I know I am not the patient the medical world wants. I am not the healthy person I want to be, but I don’t get that choice. I respect the time of those within the medical field. Please respect me. I know I can’t be fixed, but the medical system can be.
Sami Jankins lives in Wisconsin and writes for several publications around the country. She holds an MFA in Screenwriting from UC-Riverside at Palm Desert and is a dating advice columnist for The Good Men Project’s column — Dating in the Digital Age with Sami Jankins. She is the current press and social media editor for The Coachella Review. She has an ongoing blog called Chronicles of a Cheerful Clotter for HemAware Magazine, where she details her life with chronic health conditions. Sami is also a co-producer for the documentary Invisible: The Film, that focuses on individuals living with chronic pain and invisible illness. She has served on the Board of Directors for the National Hemophilia Foundation, spent time as a senatorial intern, and was Miss Wisconsin for the ANTSO program. In addition, she has had articles published in Chronicality, Elephant Journal, The Glow (Australia), I.G. Living Magazine, The Manifest-Station, The Mighty, Ravishly, and YourTango. Her interests include ukuleles and sloths. Find her @SamiDan19.