Oct 11, 2011

My Medical Records: Fact or Fiction?

As I have been proudly checking things off of my ever-expanding 'To Do' list, I thought I would share that I finally ordered and received my medical records (the vast majority of them anyway) from the past six years. After a cursory review of them it is abundantly clear exactly when I got sick as my heart rate went from 62 in the office a few months prior to getting sick with POTS to over 100 at nearly every subsequent appointment. I only had a few appointments during the two years before I got sick, one for a sinus infection and one for painful periods. Other than that, I was healthy as a horse. Then in September 2007 the doctors appointments, and hospital visits, came nearly on a weekly basis for several months. Each time I suffered tachycardia, palpitations, weakness and fatigue.

My hospital bloodwork revealed a low potassium level several times. The doctors and nurses informed me at the time while they forced me to consume a sickening concoction of concentrated liquid potassium drink to bring my level back up to normal. What they neglected to tell me during all these hospital visits was that I consistently had other 'high' and 'low' markers in my bloodwork that didn't fall within normal range. I was a bit shocked to discover this while leafing through my medical records. My mom would always remember to ask them in the hospital (in case I didn't remember to ask or couldn't) if all my bloodwork looked okay and was in the normal range. They would always reply, "yes, everything looks good." So much for trusting ER docs. As long as you're not about to immediately die, they send you on your way home with instructions to take it easy and follow up with your regular doctor. Lovely. At the time my regular doctor was a woman who only knew how to shove antidepressant samples down her patients' throats.

Another thing that interested me about my medical records: certain doctors would make snide remarks in their notes about my mother, my neighbor or my grandmother accompanying me to appointments, saying that they were very vocal, or answered too many questions on my behalf. These were the times I was so sick I could hardly walk into an appointment on my own or speak for myself. I was glad they were there to advocate for me and make things a bit easier on me. But according to my records a few of the doctors I saw seemed to mind. Their jobs are made much easier I'm sure when they don't have "difficult" relatives around to answer to. Some doctors can't stand to be inconvenienced, questioned or stood up to in any way. This is not true of all doctors, but a large chunk of them who believe they are superior to their patients and respective families simply because they are the one with the letters behind their name and some general experience (although just about every hospital doctor I've seen has lacked any specific experience in treating or even recognizing dysautonomia).

Enough of my rant for now, just thought I would stress the importance of obtaining and reviewing your own medical records to make sure you don't have other underlying conditions that may be contributing to or exacerbating your dysautonomia. Oh, by the way, I now apparently have "mild central airway disease" as indicated by a chest x-ray in 09 compared to the one I had done in 08 which was fine. Would have been nice if someone from the hospital had told me this back when I had the x-ray done. Not sure what the heck it is, if there's anything I can do about it, or if it even causes any symptoms. I am assuming it's not that big of a deal otherwise the ER doc would have told me about it, right? Not necessarily. If there's one thing I've learned by reviewing my medical history on paper it's that it's never safe to assume anything. It's best to have the proof right there in front of you on paper. A lot of doctors are too lax to care whether they tell you everything or not, many are too busy to give you the full story, and many are just human and make mistakes, forgetting to tell you something that might have been important. Make a habit of requesting your medical records after every important appointment now on. I'm going to make sure I do from now on.


  1. ER doctors are awful. I hate to say that, as that term generalizes all doctors *and I do realize a couple few are good*- but honestly... ER's in general just are not good in assisting people who do not have immediate life threatening situations. I think some people fail to realize that the Emergency Room is also used for urgent situations (even if it is not life threatening). Granted, some people abuse this (probably because they don't have insurance!) but the ER staff can sometimes be the laziest of all hospital staff. I have layed in the ER so many times without even a blanket, or my IV started for almost 30 minutes! (When my mom and I looked outside the door) nurses were eating junk food and talking. SERIOUSLY.

    Ugh - I'm SO SO sorry about your experiences. It's great that you are taking control of your own health care and received copy of your records! I have always wanted to do that -

    Take care lady,

  2. Yeah I hear ya there. I can't really remember a time when I've had an ER doc spent more than about 5 min with me after laying there miserable without food and water for hours on end. So funny you mention that about the junk food! My last ER trip my mom went out to the desk several times to see when they could come back to hook up my iv after I was unhooked to give a urine sample. No one had checked on me in hours so I was getting dehydrated again and she actually went out into the hall a few times and everytime the doctors and nurses were chit-chatting, leisurely enjoying their sodas and snacks at their computers as if they were on vacation or something...not acting like they were taking care of a whole wing of sick people, many of whom were probably way sicker than me. And they wonder why their patients sneak food, I was about to pass out from starvation if not from POTS! Ugh.

    I'm definitely trying to start managing my own health care. I would like to do some physical therapy in addition to Levine's research study and also get my TMJ under control through natural means somehow, and most importantly, avoid trips to the hospital! Hope you are well, let's catch up soon!

  3. I've never even considered doing this. But it's a really great idea and I'm going to look into it.

  4. Please do Rachel. I think its a smart idea for everyone to have an idea what your charts actually say and what doctors are recording.

  5. As someone working in a hospital, my first job was to be in the ER. Those nurses and doctors there were just fresh graduates. They were there so they can know the word “Emergency”. The ER is actually meant for treating life-threatening injuries and illnesses. The nurses and doctors instructed there are to heal from the very worst to the very light.

    James Guertin