The above photo shows an inaccuracy that was documented and most likely placed in my electronic record. My liver specialist sent me a letter saying that my “elevated liver enzymes had again normalized”. He followed that up with a sentence stating that he would “hold off on further work-up at this time and continue monitoring periodically.”

Here is a perfect example of an inaccuracy paired with statement which could have a chilling effect on valuable work-up by other doctors, especially in related fields.

First, as you can see my Alkaline Phosphatase is still above the normal range. He should have said they’ve “improved”, from the previous blood draw, not that they’ve “normalized.”

Second, to be truthful he should have said “I would hold off on liver biopsy at this time” because that was the only form of “work-up” he could think of to do regarding my liver enzymes.

Seeing as I have an appointment coming up with a brand new Gastroenterologist in May, already a long-enough 3 months away, I don’t want her to look at that and follow his lead and cabosh whatever work-up she may be thinking to do regarding the lower GI spasticity (and long-term chronic constipation which I can’t even feel). Considering this Dysautonomia has yet to be treated since I left Piedmont hospital and all the dodging my GP has done regarding it, I want these symptoms fully looked into, and documented, since it’s not all about blood pressure, because if they aren’t this could go on forever and the root cause might never be treated.

I realize now after the ER incident (for the backstory see the post The Dark Man) just how much power words in a patient’s chart have, and the importance of checking to make sure things written are accurate and having them corrected as soon as possible when they are not.

Figuring I better clear this up sooner rather than later I called and left a message for a nurse to call me. Luckily one returned my call fairly soon after, and she was very understanding. I guess she has seen first-hand the damage irresponsible charting can do so she told me she knows this kind of thing goes on and does hurt patients’ ability to get proper care, so she would ask that these statements be changed in the electronic record, and she even told me she wished I could get an earlier appointment with the Gastroenterologist. She said at the end of our conversation that I could feel free to call her anytime and I took down her name.

I thought yesterday would be a day of rest before the Gallium Scan today but no such luck. With all the tests and orders that had backed up over the past few weeks and months invariably there were some things that were confusing and I had to make some phone calls to radiology to make sure that the Modified Barium Swallow test coming up was one and not two different ones, and that I hadn’t been double scheduled at two different locations. Emory’s code is sometimes hard to read and there are letters signifying which location things are being done, so after calling and making sure that I would be going to the right place for that and then verifying whether the physical therapy evaluation was at the same place as the physical therapy “treatment” I had to call and make sure my transportation was scheduled with a reliable service because the other day’s appointment took 6 hours for me to get home and I felt like hell afterwards. I don’t want a repeat performance of that experience. First they were late getting me to the place, and then had trouble opening the door that has the lift on it. One of the two quality assurance people was in a meeting so I spoke with the other who had one service lined up but was trying to get me set up with a better one. I never received a call back by the end of the day, so I am really hoping she gets this worked out so that I’ll get there and get back in a timely manner.

After Monday’s fiasco I came home to find a notice from the mail carrier tucked into the crack of my door. It was from Emory Healthcare. Usually in my experience a Certified Letter isn’t good news, so I thought. “Oh boy, what fresh hell is this.” It figures they’d send it on a day when I was at a medical appointment.

I looked the tracking number up on the USPS website and it says “Your item departed our USPS facility in NORTH METRO, GA 30026 on Saturday, March 5, 2016 at 9:18 pm. The item is currently in transit to the destination.”

The zip code indicates it was mailed from Duluth, GA.

It must have been mailed on Friday, then.  It could be a response from the President of Emory Healthcare because whomever sent it didn’t know how to spell my name. Why he couldn’t just send me a regular letter like the others from Emory did is beyond me, or an email for that matter. It was supposed to be re-delivered today but there was a temporary carrier and she had not been briefed. She told me she’d ask someone to come back out here yesterday since I was going to be out at that time today, and she wrote it down but nobody ever re-delivered it, so I guess I’ll be on pins and needles until God-knows-when. I hope it’s not more of the same stonewalling and empty and insincere apologies of non-responsibility I’ve gotten from each chain of command so far. Would it be too much to ask for once for a big corporation to say, “We messed up, and we are going to correct this ASAP” and then actually do it?

If the mail carrier tries delivering it again tomorrow I will most likely not be home yet and then I’ll have to try to get it delivered a 3rd time.

One good piece of news is that someone from Shepherd Center called me back late yesterday afternoon and told me she’d call me again tomorrow to work on setting me up with one of their social workers. Apparently she dialed the wrong number a few days ago and that was why I never heard back. Her husband was picking her up and she had to leave before we’d finished our conversation, but she, like the hepatology nurse was very nice and actually got what I was saying regarding the nightmare I’ve been living through.

Getting back to the topic of what’s in your medical records; you should check this regularly just as you would check your credit report for errors or inaccuracies. You might be very surprised by what your doctors aren’t telling you!

It’s also a good idea to ask for copies of your doctor’s notes. It’s better to find out now than several months or years later when you find you can’t get any help and are wondering why.

When you find things that are inaccurate in the record ask the doctor to remove or re-word it so that it doesn’t cause more problems for you down the road. If he/she won’t do that or minimizes your concern that tells you that particular doctor isn’t genuinely looking out for your best interest and only looking out for himself. A doctor who truly cares about you should not have a problem with your request as they wouldn’t want to do anything to hurt you or hinder your getting the medical care you need.