When Your Wellbeing Gets Lost in the System

          I have been very fortunate to have a some brilliant minds working to keep me alive and improve my quality of life. Two of my specialists are so good at what they do that people come from all over the world to seek out treatment from there. I merely have to get a 30 minute ride. I honestly don’t know where I would be without them. That being said being a patient of these doctors who are at the top of their game and are leaders in their field has some serious downfalls.
Here are just a few:

  1. Months if not years of wait time for a new patient appointment, if they’re even accepting new patients
  2. Long periods of time in between visits after becoming an established patient
  3. They’re stupid busy between conferences, surgeries, case load, and teaching
  4. They don’t communicate with the rest of your team whether due to their schedule or their ego this can become a big problem
  5. I can’t remember the last specialist who was knowledgable about my rare diseases who took insurance
  6. Their offices are usually administrative nightmares
  7. You usually have no one to go to (with cases like mine…rare meets complex and misunderstood) for a second opinion. You’re second opinion become Google which can be dangerous.
  8. You will wind up having to try and get urgent medical care from Emergency Departments which are neither equipped to deal with your…”specialness” or too open to the concept of you knowing more than them about your conditions/ treatment needs.
        As great as it is to have some brilliant minds treating you, you wind up bearing a huge load on your own. Anyone with rare/chronic illnesses can relate to the feeling of their care getting lost in the system. I have been utterly dumbfounded by how unequipped our healthcare system is to deal with the chronically ill. According to the CDC, as of 2012 about half of the adult US population had one or more chronic illnesses. Thats roughly 120 million people. One in four Americans have two or more chronic illnesses.
      I wanted to write about this for a couple reasons, but the main reason being in response to an incident that happened a couple of weeks ago. Over the years I have slipped through the gaps in the system here and there but most of the time no major harm resulted in it, just frustration and longer waits. This time was different.
      It started like many incidents nowadays do, I had passed out in the shower and woke up in the ambulance three hours later (it was also 3am) with IVs and monitors galore and a big shrug given when I asked what happened. Upon my arrival to the ER I was fairly quickly assed by a resident and hooked up for monitoring by a nurse and left there. Anyone who has spent enough time in ERs knows that the worst thing that can happen is still being there during shift change. 0600 roles around after a couple of hours staring at the ceiling (I was in a cervical collar and left lying flat on my back) and one tech coming in to take an x-ray I realized there was no way I could fly the coup before shift change. The doctor comes in to tell me my ECG was abnormal and they’re waiting on blood work results (which they never drew). He told me my new doctor’s name and that he will come in when he gets here and repeat the ECG. If its abnormal again they’ll admit me but if it’s normal they’ll send me home to follow up with my cardiologist. 0900 rolls around, no doc, no repeat ECG, no bloodwork. I call the nurse. She takes the blood seemingly pissed off that I was checking up on things trying to get answers. 1130: nurse comes in and hands me my discharge papers saying she can’t find any of my four doctors to talk through them with me but they need the bed so they’re discharging me. I ask about the repeat ECG. She shrugs. I get frustrated and leave.
          I call my cardiologist and he agrees to see me later that day. He does an ECG and it was once again abnormal. He reviews my medications and asks me about one that I started the week prior per orders from my GI doctor. “This medication has a blackbox warning for causing a prolonged QT interval which is very dangerous. Your doctor should have never prescribed you this. You should not have been discharged. You need to stop this medication immediately and go see an electrophysiologist.”
Note to self: need to find new GI doctor.
Note to self: call cardiologist when before taking any new meds
Note to self: stand up for yourself in the ER
Note to self: you need to be on your toes, you’re health and safety is your responsibility

        Several doctors appointments later and the issue was addressed with relatively few repercussions (lucky compared to what the situation could have been). I now have to get a heart monitoring chip inserted above my heart to collect data and try and figure out if there is another underlying condition.
        It scares me to say I got lucky because that means things could have gone way worse. I’m constantly worried for the day that I won’t get as lucky. When will it be? Will I be alone? Will I get to the ER but have it be dismissed?

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