What I learned by reading medical records from my hospital stays

I was recently listening to an audiobook in which the main character had a stomach virus. It reminded me of an experience I had with a stomach virus that landed me in the hospital. That, in turn, led to a diagnosis of paroxysmal nocturnal hemoglobinuria (PNH).

While I was thinking about it, I decided to sign into an online patient portal that has all of my medical records. That led me down a rabbit hole.

First I looked at the records from my initial hospitalization, which showed declining complete blood counts, radiology reports from CT scans, and an analysis from a bone marrow biopsy. I’d heard all these results but hadn’t seen them, so I felt as if I were just processing them now, five and a half years later.

A low hemoglobin number and an extremely low white blood cell count caused me to be labeled as neutropenic at the time. Reflecting on that period of my life, I just sat at my computer frozen as I processed how sick I was.

In the hospital, my brain had been focused on other things, including doing all I could to get out. The results didn’t faze me because I was listening to the doctor to learn the next steps. I didn’t sign into the portal there and didn’t have results printed out for me, so I could remember only my memories, not the actual numbers. Now that I’m more educated about what those numbers mean, I’ve finally been able to absorb them and the experience in a therapeutic way.

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What my mind recorded and what the hospital did

Because I have a phobia of needles, I tried to reason with the doctors that I didn’t need all of the tests they were ordering or even the blood transfusion I received. I was trying to convince them that I didn’t need any more needles. But now I can see that yes, I did need them. I never questioned if the doctors were right or wrong, but I was mad at them for putting me through it all. Today I forgive them because I see it what I didn’t see then.

After looking at the lab results and numbers, I began reading the doctors’ notes and assessments. I giggled when I found the words, “She is quite needle phobic.” Poor doctors, I did give them a hard time. But seeing their words proclaiming how sick I was led me to an out-of-body experience.

I was reading the notes as if they were about some random person, and I had to snap myself back to reality and recognize that I was the patient they were discussing. I felt sorry for her.

I did this research for all my other hospitals stays, connecting my memories of how I felt physically and mentally to the labs and notes in my portal. My memories had discrepancies when it came to certain lab numbers or medications I received. Correcting my memories was part of processing my medical history since knowing what I do now about PNH.

Something else that stood out in my records were the billing codes for the hospitalizations. One of my bills noted that I was “obese,” even though my weight has always been in a healthy range and obesity was never discussed with me in the hospital. I both laughed and was offended, as to me, the note didn’t make much sense. I connected other codes with evaluations that didn’t make sense, either.

I ended up speaking with a medical professional about the codes to see whether I should be concerned about anything they included, such as the reference to obesity. The response was that hospitals code bills in certain ways for insurance companies, and it was nothing to be concerned about.

I accept that, but it’s interesting as a patient to read the codes in the context of my experiences. Seeing my physical and mental states translated into numbers for payment purposes was fascinating.

This rabbit hole of exploring my records opened my eyes to how my medical memories were put into words by someone else: doctors who observed my situation, lab workers who explained my blood draws, and office workers who quantified my bills.

I realize these records are only a portion of what I went through, and I also wonder if my condition might’ve played games with my memories. Maybe I’ll use a journal when I’m in the hospital from now on to create my own medical records. When I process them later, I’ll be able to compare them with my online portal to see how similar they are.

Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.

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