Did Following Protocol at a Top Hospital Make Me Sicker?

It was 6:30 a.m. I woke up panicking and gasping for air in my hospital bed. I couldn't breathe — at all. I was alone and couldn't get air in. I'd had excruciating chest pain for over a day. It was fortunately and unfortunately a living nightmare; I got through it.

In the moment, all I could think to do was repeatedly smash the nurse call button on my bed while at the same time telling myself to try and breathe in air through my nose. Just stay calm, and breathe through my nose. After a minute or so, the nurse calmly responded on the speaker. "Hello." I told her the best I could that I had just lost my breath and was having issues breathing. Nobody came to my room. Nobody. I was in one of the best hospitals in the country.

I'd come into the ER days earlier, extremely sick to my stomach. I couldn't keep any fluids in my system. It didn't matter what I drank, it wouldn't stay in me. I had been through similar situations many times before. That's what happens with cancer and years after cancer, if your immune system has taken a hit. You get infections. You learn how your body reacts and you learn what works best. You, the patient, learns.

To the doctors, it looked like just an infection of some sort. But they were going to wait on the cultures to come back. They needed the data — the information that included numbers and science. They needed something definitive, a report, something for the records.

I kept telling them I had a low-grade fever and that I needed antibiotics, but they wanted to stick to the new protocol that fit in line with the World Health Organization (WHO) and the Centers for Disease Control's (CDC) approach to how antibiotics were administered. That meant holding off on antibiotics until they got their test results. Besides, a temperature of 98.7 was not fever, according to their numbers, their information. But I had known since my bone marrow transplant in 1998 and several infections after, that a temperature of 98 and above was something for me to pay attention to. This was based on my data, my information and my personal, real-life experiences. I didn't need a test to come back.

I had my spleen removed at an early age. It was often "protocol" for patients with Hodgkin’s at the time. Not now, however. Not now because it can make infections worse on the body.

During my stay in this top-rated hospital, science, data and protocol made me sicker. I went days before getting the antibiotics I needed or even before being given fluids. I was in the hospital for seven days straight. My temperature went well over 102 degrees. Even with a cardiac history, I had to demand an echocardiogram to diagnose my heart issue that initially, according to one doctor, the symptoms led him to believe it definitely wasn't a heart issue.

In the end, I was offered weak-handed apologies like, "I'm sorry this happened. We're a learning hospital. A lot of us are residents. This kind of thing is going to happen." At the same time however, the blame was shifted, "Well you know your body better than anyone else."

Well why didn't you listen?

Doctors, not all of your best data will grow from some blood culture. So, I want to suggest a new protocol for you: active listening. Sometimes the best data comes right from the mouth of the patient in front of you. Ironically, following this protocol might have saved me days in the hospital, excruciating chest pain and delayed diagnoses.