Good evening, dear readers! Did you know butterflies have taste sensors on their feet that help them decide if a plant is good for laying eggs? Talk about walking on flavor! Now that you’ve been enlightened with this delightful tidbit, let’s dive into the rollercoaster of my medical saga. Buckle up, folks—this one’s a wild ride.
I am going to do this in two parts because it is taking me a bit to get through this. This is part one, when part two goes up the link will be at the bottom, and vice versa.
To set the stage for today’s tale of events in the next post, we have to rewind to December when my life took a dramatic turn. Pulmonary emboli—blood clots blocking the arteries in my lungs—were discovered. Terrifying, right? These clots can severely impair breathing, spike your pulse rate as your heart fights to pump blood through narrowed pathways, and, well, let’s just say they’re not something you want as part of your health résumé.
Back then, chaos was already brewing in my life. Repairs were being done in our bathroom, which needed asbestos abatement, and we were staying in a hotel. Upon returning home, we discovered that the workers had, quite literally, draped nothing to contain the dust and debris. As an asthmatic, this was a recipe for disaster. The resulting asthma attack was so severe that not even Ativan, meant to counter potential anxiety mixed in, helped. Off to the hospital we went, with paramedics alarmed at my unresponsiveness to their medications.
The nightmare only worsened at the hospital. Breaths per minute in the 40s (normal is 12–20) and a pulse of 130–140 (normal is 60–100) should have screamed “urgent care needed.” Yet there I was—left in the ambulance drop zone hallway for over six hours. To make matters worse, nurses were openly gossiping about shuffling patients around, with comments that should never be uttered in an ER. When the charge nurse came by suggesting patients without complex cases be moved to A-pod, it seemed like I might be waiting awhile yet. That was until they decided to remove my oxygen—without any orders from a doctor or respiratory therapist, and without my consent—just to relocate me. Without the oxygen I was not a complex case.
Let me explain how severe this misstep was. Oxygen therapy is a medical intervention that must always be handled under strict orders due to the risks involved. Improperly removing oxygen can exacerbate hypoxia, leading to life-threatening complications, including cardiac arrest. The fact that this action was taken without proper authorization and against my consent is not just negligent—it’s dangerous.
Upon arrival in A-pod, the whirlwind continued, with nurses rapidly gowning up for isolation protocol. Seeing a COVID test in their hands, I couldn’t help but quip, “What’s the plan? Keep me in the loop, please—I need it.” Their explanation was met with my measured response: “Sure, you can do the COVID test but only if you first, explain why I spent six hours in the hallway leading to the ICU and maternity ward without a mask. Also, the bloodwork can happen, but medications that don’t work are a hard no so they can be taken away. Especially when I tried alot of the medication at home and then the EMTs did and no change. And I’ll need to speak to the charge nurse immediately.” My firm tone must have thrown them off, as they didn’t even attempt the bloodwork right away.
When the doctor finally arrived—with no isolation gear and her arms crossed in an unfriendly stance—her interaction left much to be desired. After asking me to recount my current condition, she cut me off mid-sentence to dive into past medical history. Upon hearing the word “anxiety,” she walked out, disregarding the rest of my history and neglecting to discuss a plan of care. We all know what she got stuck on. My mental health. This is all in her head, she is just having a panic attack and doesn’t know what this is… etc I don’t hide these things because they need to be known but I wish I could because this happens to often way to often. I was just mad enough and scared enough to keep from going nonverbal barely. This is not only dismissive but downright dangerous. Doctors are ethically obligated to gather all relevant information for informed decision-making. Her actions demonstrated a lack of patient-centered care and undermined the trust vital for effective treatment.
Upon arrival in A-pod, the whirlwind continued, with nurses rapidly gowning up for isolation protocol. Seeing a COVID test in their hands, I couldn’t help but quip, “What’s the plan? Keep me in the loop, please—I need it.” They explained the situation, and I responded, “Okay, the COVID test you can do, but first explain why I spent six hours in the hallway leading to the ICU and maternity ward without a mask.” My tone was firm but reasonable. “The bloodwork can happen, but medications you want to give me before the doctor even sees me—hard no. And I’ll need to speak to the charge nurse immediately.” That seemed to throw them off, and they didn’t even attempt the bloodwork right away.
When the doctor finally arrived, I had a bad feeling. She entered with no isolation gear, arms crossed—the kind of body language that screams “this isn’t going to go well.” She started with, “What’s going on?” but cut me off midway to jump into past medical history. When I mentioned anxiety, she abruptly walked out. Yes, walked out. Her job, in theory, was to gather all necessary information for an informed diagnosis and plan of care. Instead, she dismissed me entirely, ignoring the context and complexities of my case. This wasn’t just unprofessional; it was irresponsible. Doctors are ethically obligated to listen and work collaboratively with patients, especially in cases where health concerns are multifaceted. Her behavior jeopardized my trust and my care and therefor my life in this case.
After the walkout, a nurse came in holding meds: inhalers and Ativan. Anyone who knows me would have caught my tell—a slight upturn of the mouth that’s less “friendly smile” and more “cat about to pounce.” I was at my limit. Using a voice honed for chaotic emergencies over many years, I made myself very clear—not just to the nurse, but to anyone within earshot, it is not a yell it is just a skill like a drill Sargent has just medical version and it carries well. “I have already stated no to those medications. I’ve had these exact doses, and they don’t work for me. These won’t come near me unless a respiratory therapist is involved for my safety.” I paused just long enough for impact. “The Ativan? That’s insulting. It’s discrimination, plain and simple. Your doctor didn’t even listen to all the information before storming out at the mention of anxiety.” When I asked for another Dr I was told she was the only one on. Come on, in a major city at one of the busiest hospitals that is a straight up lie and also illegal cause I have the right to a second opinion.
Then there is this:The dismissal of my symptoms as anxiety highlights a pervasive issue in healthcare known as diagnostic overshadowing. This occurs when physical symptoms are overlooked or incorrectly attributed to mental health conditions, leading to delayed or missed diagnoses. Such practices not only undermine the standard of care but also violate Canadian laws prohibiting discrimination based on mental health. Healthcare providers are legally and ethically obligated to treat all patients with fairness and respect, ensuring that mental health does not detract from a thorough investigation of physical ailments. Diagnostic overshadowing perpetuates stigma, erodes trust in healthcare systems, and can have life-threatening consequences for patients who lack the knowledge or confidence to advocate for themselves.
In my case, diagnostic overshadowing was compounded by breaches of key legal responsibilities, including duty of care and informed consent. Duty of care requires physicians to exercise reasonable skill and judgment in investigating and diagnosing conditions—a responsibility that was disregarded when my symptoms were prematurely dismissed. Moreover, informed consent, which ensures patients fully understand the risks and benefits of medical decisions, was entirely absent. By failing to consider the seriousness of my symptoms and brushing them aside as anxiety, the healthcare team created a dangerous situation that could have escalated further had I not intervened. Addressing this systemic issue requires greater accountability, better training, and a cultural shift within healthcare to ensure patients are treated as whole individuals, not stereotypes or assumptions.
One way to help with this my friends? Stop Being a Compliant Patient
This time, my voice was louder—not out of anger, but with the deliberate intention of making sure other patients could hear just how bad things had gotten in my room. I was done being ignored. If quietly advocating for myself hadn’t worked, I’d make sure my voice carried accountability far beyond the walls of that room. It was no longer just about my care—it was about shining a light on a system that had failed me and ensuring it couldn’t be swept under the rug. Every medical professional who heard what I said should have put in an incident report or said something to a supervisor. I get the feeling that this is the gallbladder hospital that didn’t happen. A Risk That Saved My Life this is the story.
Finally, a nurse I hadn’t yet interacted with closed the door and introduced herself—not as the charge nurse but someone willing to address the mess. I outlined my concerns, and she listened—properly listened. By the end, she summed it up perfectly: “You just wanted to be listened to and heard, especially when things were being done that were clearly wrong. Let’s sort out the medication issue first since you’re right—missing some of these meds in our care is dangerous it is night so we might not be able to get you all of them. I’ll be your assigned nurse until shift change at 7.” For the first time that night, I felt slightly calmer, though I still hadn’t received all the medications I’d been missing but I get it at the middle of the night. To many nights in the kids hospital will teach you lots.
Despite the pain bringing me to tears, it remained unaddressed. At this point, my focus was on breathing—I’d deal with the pain if it meant I could keep going. Later, when the doctor returned, she stood at the doorway, arms still crossed, and proceeded to discuss my results loud enough for others to hear, violating multiple privacy laws. She said, “Your D-dimer is slightly elevated.” Then, she paused—a rookie mistake. I stepped in, “Okay, so you’re thinking a clot of some kind, small though. What’s the next step?” My aim was clear: I wanted her to know I understood far more than she assumed. She responded, “We can’t do this one scan because you’re allergic to contrast dye, so we’ll need to perform a nuclear scan.”
Hearing that hit me hard. “You’re going to need to sedate me or make me so sleepy I don’t care about what’s going on. That test—out of the hundreds my late daughter endured—nearly broke me.” My daughter fell sick a year after she was born and spent nearly all of the last three years of her life in the children’s hospital with a complex medical condition. This specific test was one she had undergone, thankfully, only once, but it was emotionally devastating to witness. I nearly broke. By then, I had already endured so many of her tests and surgeries that I thought nothing could impact me that deeply anymore—but this test did. The mere thought of going through it myself was overwhelming.
Her response? “Well, the number is only slightly elevated, so I doubt you have a clot anyway. We can skip the test.”
To put it simply, this was dangerously irresponsible. Pulmonary embolisms can escalate quickly and become life-threatening if not diagnosed and treated properly. When I was brought in, I was already showing clear signs of escalation—rapid breathing, a dangerously high pulse, and oxygen dependency—all red flags that my condition required urgent and thorough investigation. A slightly elevated result on a test like mine should never just be brushed off—it’s a signal that further investigation is needed to confirm or rule out something serious. By skipping the scan, she was gambling with my life, and that’s not okay. If I asked her I would say odds are damn good that she would try and say the mental health risks out weight the benefits of the test. I think she figured out how to keep her mouth shut cause if she won’t come any further in my room then the doorway and I am in a wheelchair normally that is right next to me in the bed. I am no threat. Yet something was making her feel threatened. I wonder why. If you ever find yourself in a situation like this, stand your ground and demand the care you deserve. You’re your best advocate.
By morning, another doctor arrived with the news I’d dreaded. “You have pulmonary emboli. Do you know what this means?” Sedated as I was, my brain kicked in. “Multiple clots, both lungs, lower lobes, I read the report though my access but not all details are there yet. How many, and how large?” He confirmed they were in the lower lobes of both lungs and that I would need blood thinners. He told me I would need another scan done in three months and that my family doctor could do it. I explained that I didn’t have a family doctor and asked how we could ensure continuity of care. His response? “Go to a walk-in clinic and get a referral.” I tried to fight it, I tried to advocate for myself but at that point I was so medicated, so exhausted and honestly, wasn’t sure it was worth fighting for the care I deserve. That was the depression talking, the way I had been treated besides the EMTs and the first group of nurses in that hall was vile and disgusting. I seen the EMTs come by with another patient a few hours later, they did not seem impressed at all to see me still waiting. One even came over to check on me, when he asked if I was alright. My answer? I don’t know, I am scared and haven’t seen anyone yet and still can’t breathe I’m terrified. He gave me what comfort he could but I did see him make a stop at the triage desk on his way out which isn’t normal. It was to far to hear anything but he did gestor in my direction and with how caring him and his crew was to me, I think he was trying to advocate for me. Yet even that memory, wasn’t enough to make me want to fight.
To make matters worse, he discharged me under my own care while I was still heavily sedated. Legally, patients under sedation should only be discharged to a responsible adult who can monitor them for at least 24 hours. Sedation impairs judgment, coordination, and reaction times, making it unsafe to operate a vehicle or make critical decisions. This oversight not only violated legal standards but put me at significant risk of harm. Best practices—and the law—dictate that a sedated patient should not be released until a safe ride and appropriate monitoring arrangements are confirmed and that ride comes to pick them up in the unit. I asked where the bathroom was, no one checked to see if I could transfer to my wheelchair without help before leaving me alone.
Wheeled around the hospital for a bit aimlessly until I decided to text my roommate cause he was home, and I wanted my bed. I kept getting asked if I was ok and I think my response was along the lines of “I must be I was discharged, can you point me to the main entrance, I keep getting turned around with so much Ativan” which my friends is not a yes. I also doubt that I was speaking well at all, or the most coherent. What was going on I think, is I was looking for a safe place to curl up and sleep…. in other words my autistic meltdown.
My roommate did show up, he tracked my cell phone and got me to the car, I could barely stand I was so out of it. He had to buckle me up. At least he knows how to fold my wheelchair up. However let me point out that near that main entrance inside is a huge flight of stairs that goes down that is easy to miss with a clear head. Outside that door the ramp so to speak is so slopped that your going into the road if you aren’t fully freaking awake.
This makes how many dangers just at discharge that were not considered with the simple how am I getting home. If it had not been so cold I might have tried to make it there on my own and that is a 30 drive with some of it on a highway. I didn’t have my coat so that kept me inside. My biggest fear though, what if I had been in a condition to drive myself there, would I have driven myself back? I want to say no because I have such strict rules about that with my meds but when your sedated there are times you are half awake and half asleep while dreaming. So who knows.
This advice raised serious legal and ethical concerns about continuity of care. According to the College of Physicians and Surgeons of Alberta (CPSA)—the regulatory body overseeing the practice of medicine in Alberta—continuity of care is a professional and ethical obligation that ensures patients receive coordinated and seamless care. Physicians are required to arrange and notify patients of necessary follow-up care, provide clear instructions, and ensure handover of relevant patient information to facilitate ongoing care. Suggesting I rely on a walk-in clinic—a setting not equipped for long-term case management—was not a viable solution. This approach placed me at risk of falling through the cracks in the healthcare system and jeopardized my recovery.
Then came the discharge—without instructions, which was incredibly dangerous. Pulmonary embolisms require careful management, including clear guidelines on medication, activity restrictions, and warning signs to watch for. Without this information, I was left vulnerable to complications that could have been prevented with proper education and follow-up care.
That night, one nurse in particular went above and beyond. She learned my stimming habits, talked me through distractions, and stayed past her shift to see me through the scan. Her compassion probably saved my life. In the final hours of her shift, she sat with me as the sedation from the Ativan began to wear off. We talked about everything from medicine to random life moments, and her kindness made an unbearable night somewhat bearable.
Being an informed patient saved my life, but what if I hadn’t had the knowledge I do? If I had simply complied without questioning decisions like skipping the scan or accepting a precarious discharge, the consequences could have been devastating. Without treatment, pulmonary embolisms can escalate into cardiac complications or respiratory failure, outcomes that could have been avoided with proper care.
This is why it’s so important to Stop Being a Compliant Patient Trust your instincts and ensure you’re fully informed before accepting a plan of care. You don’t need to be a doctor to stand your ground; you just need to believe in your right to receive the care you deserve.
Please feel free to share your horror stories with medical care and how you handled it.
Now going to go work on part 2 because that is … well now yesterday’s events that left me in hell.
Who am I? 
I would love to hear from you!