The Most Shocking Thing I Found in My Medical Record

My heart was pounding as I tried to hide my clasped hands under my hospital blanket so those around me couldn’t see they were shaking. We were going over my medical history. And then I was being wheeled back to remove the remaining cancerous tissue from dermatofibrosarcoma protuberans (DFSP). It had slid its way by my rib cage through all seven layers of skin down to my facia. I was completely and utterly terrified.

The nurse was asking “the final before surgery“ questions as my sarcoma surgeon entered the room.

Then all of a sudden, the nurse said to me, “I’m looking over your prior diagnosis. How long have you been diagnosed with Peutz-Jeghers syndrome?“ (This is a disease characterized by the development of noncancerous growths called hamartomatous polyps in the gastrointestinal tract, particularly the stomach and intestines. It presents a greatly increased risk of developing certain types of cancer.)

My jaw dropped and I didn’t know what to say. While I sat there obviously dumbfounded, my surgeon interjected, “Why didn’t you tell me you have Peutz-Jeghers syndrome? You should have been monitored by someone at the cancer center years ago.”

My cheeks flushed red. And with a nervous chuckle, I told him the honest truth.

“I didn’t tell you I have Peutz-Jeghers syndrome because I didn’t know I had it. This is the first time I’ve actually heard of this disease. What exactly is Peutz-Jeghers syndrome?“

We all sat there in shock, trying to process a diagnosis none of us knew I had and wondering if I actually had it.

The nurse told me she would try her best to find out how I was diagnosed with this as the surgeon grabbed my gurney and wheeled me to surgery (a surgery that successfully removed the remaining cancerous tissue).

After months of calling, we discovered my diagnosis of Peutz-Jeghers syndrome was an absolute fluke. A surgeon doing an upper endoscopy on me was having his notes digitally dictated. With my last name being Yaeger, somehow a mind-blowing accident occurred and it ended up being noted I have ”Peutz-Jeghers syndrome.“

When realizing this mistake, the surgeon talked to me personally and apologized profusely for having that in my notes, assuring me I don’t have that condition. So for months, I wondered about and studied a mysterious tumor growing disease I don’t actually have.

Being a rare disease patient, your body falls apart in multiple interesting and terrifying ways. And with modern technology and patient apps, we have access to each and every test, poke and scan showing our bodies “health destroying rebellion.“

But the most shocking things I have personally found in my records are mounds and mounds of misinformation or medical errors. For example, my cardiologist notes stated I had perfect vitals (when he never checked them). When the gynecologist I saw right after took my vitals, they almost sent me to the ER because my blood pressure was completely off and my heart rate was sky high.

Multiple doctors at a clinic called and stated my labs were perfect. To my surprise, I logged into the patient app and discovered my labs were far from perfect — which led to my stubborn self spending hours researching lab results in the patient library. Then, when I came to our next appointment, a pretty shocked doctor with notes about my labs was shocked I actually knew why the tests were off. Both doctors ordered more testing based on the “off” test results.

And I’m pretty sure it’s still stated in my records I have a history of anabolic steroid use. (Believe me, if you saw my puffy cheeks and incredibly weak arms, you would know the only steroid I have ever used is prednisone.)

In my records, it’s also been listed I’ve taken medication I’ve never even heard of, been allergic to medicine I’ve taken on a daily basis and been diagnosed with multiple conditions I didn’t even know existed.

So to save yourself from the shock I’ve experienced, I highly recommend always checking your patient records, researching your lab and radiology results, looking over your medication and diagnoses. Get to know your body and the cold hard facts about what’s going on with it. Be vocal and ask questions about anything and everything that’s stated in your records.

Be your own advocate because the only one who is going to experience the “aftershock” of any shocking diagnosis or medical mistake in your records is you.