Walking the Tight Rope By Ilene Brenner, MD

At my initial visit to the hospital, June 2020, the one where it all started, I’ll never forget what I said to the triage assistant, “No I don’t have COVID, don’t put me in the COVID section of the waiting room. I have cholecystitis.”

      “You have a fever. All people with fevers go to the COVID rule-out section.

      I cradled my painful abdomen, “I don’t have COVID. I’m a doctor. And I know that I have an infected gallbladder. Please don’t put me in the COVID section. I don’t want to get it.”

      Despite my pleadings, I was led to the thankfully nearly empty “fever section.” We chose a completely unoccupied row in the back. I cleansed the seat using some homemade COVID killer spray I kept in my purse.  Fortunately, it was not long before the triage nurse called me into a room. Unfortunately, the pain suddenly hit harder, and I was feeling much worse. I felt nauseated and lightheaded. There was a chair there, but despite sitting, I felt like I was going to faint.

      I implored the nurse, “I need a stretcher.”

      “There’s no bed until you get to a room,” she said curtly.

      The symptoms got worse and I scanned the room looking for a solution. “I don’t want to lie on a dirty hospital floor. But I need to lie down now.”

      She agreed, “You definitely don’t want to be on the floor.”

      After what seemed like hours, the doc in triage entered. I explained that I was a doctor and I had acute cholecystitis. For years I suspected I had gallstones. The pain began one day ago and the fever spiked a few hours prior to arrival. I was sick and getting sicker. It takes a lot for an emergency doc to voluntarily go to an ED. I tried to drive the process to make it go faster. Heck, I literally signed in with my diagnosis.

      This was my inauguration into a very special class of patient -- the “Doctor-Patient.” Where the roles are reversed with you the patient looking up, instead of you the doctor looking down.

      I never thought about that dynamic when I was solely on the doctor side of it. As a diminutive female in medicine, I have struggled with being made to feel smaller. Consults who scream at you for waking them up so you can get your patients needed care, sadly still exist. There are the administrators who focus on numbers that seem less and less about health measures and reprobate you for not meeting their impossible standards.

      As an Emergency Physician, I confront the failures of the health care system daily. Patients who show up are vulnerable and often need more than just medical assistance.

      However, until you yourself are lying on a stretcher, curled in a ball while sweating profusely, waiting…hoping…for the doctor to come and save you, it is impossible to truly understand that power imbalance.

      All of a sudden, all of the normal things that are done to assess a patient in the ED hit in a wholly different way. When answering the same basic questions several times to people who are much more junior to you in knowledge, it is tempting to cut them off and throw your weight around.

      I’ve seen doctors do that as patients, and I never wanted to be that guy. I know doctors often make bad patients for this reason. I wanted to be a good patient, but what does that even mean?

      Something seemingly as straightforward as answering the oft asked question, “Do you have any allergies?” is not as simple as you might think. As a patient, there are lots of medicines that have highly undesireable side effects like whole body edema, restless legs and vomiting. Those are not allergies. Technically, patients should not put these on their allergy list. But they do all the time. As a doctor, I’ll admit, I got frustrated when my patients did this, because having a long list of medicines you can’t take makes it hard to choose the best medicine for you; particularly in the case of antibiotics.

      On the other hand, while experiencing life as a patient, I found it really upsetting when I am given a medicine I know will make me feel bad. I got tired of refusing to take certain medicines. Nothing made me more anxious as a Dr-Pt than the question, “You are refusing this medicine/treatment?” The only way to prevent getting a medicine you hate, is to put it on your allergy list. So that is what I did for the worst, most malignant medicines. But bucking the system, and directing my care left me with a sense of guilt. While that was preferable to the feeling of being attacked by those who documented my refusals of care, this had real consequences.

      Switching out of my patient role and assuming some control, also meant that I took ownership of every effect of my decision. If my illness progressed poorly, was it because I refused care or because I should have refused the treatment plan? The Dr-Pt has a unique dilemma. Most patients don’t have the privilege to insist on something and be taken seriously. When you are a physician, you have this unique ability, but it must be wielded judiciously or you can make things worse.

      My ED physician was not convinced that I had severe cholecystitis and suggested I be discharged from the emergency department. I did not agree, and made my first push against suggested care and insisted on a surgical consult by a surgeon recommended to me by a friend. I advocated for myself but felt remorse in doing so. When you are sick, you are not objective and could make mistakes. You have to know when to drive the process and when to be driven. It’s a delicate tightrope.

      The surgeon put me on the OR schedule for next morning for a “routine” gallbladder surgery, so my husband went home to sleep. 

      Nothing is more humbling than waking up alone in a hospital room, clueless about the surgery you just had.

      “So when are you going back to work?” my doctor friend texted.

      “Not sure. Don’t know when I’ll be discharged. I have a shift in a few days I’ll likely have to have covered.”

      “Why? Gallbladders are no big deal.”

      I was probably told about the complications of surgery at some point, but I definitely had amnesia side effects from anesthesia. Six hours post-op, my husband called me to discuss the details of his conversation with my surgeon, and was surprised that I still had absolutely no idea about the complications that occurred during surgery. He told me something was cut that should not have been, causing bile to ooze out. He seemed reassured by the surgeon that this happens sometimes, is not a big deal, and could be fixed easily.

      “So what went wrong?” I asked my husband.

      He could not remember. He’s not a doctor.

      “And what are they planning?”

      “Some tests” he responded again.

      I was frustrated by his vague answers and he could not offer what I most needed to understand—accurate medical doctor lingo. The nurse did not have much more to add as there was not much in the chart other than an ERCP that was going to happen soon. At least that was something.

      I debated insisting on speaking to my surgeon. Someone. Anyone who could tell me more. But, I did not. Because I was still trying to walk that fine line. Eventually, later in my hospital stay, I was less reticent and more insistent about other medical issues.

      I found this doctor-patient-spouse-patient-doctor-nurse-patient-nurse communications pathway to be a comedy of errors. Well, not a comedy, because there’s nothing funny about suffering. There’s no humor in unnecessary days in the hospital. But it happens. Even with me.

      The first few days of my stay were challenging, in part, because I was floating in the abyss of interpractitioner care. I made that term up. What I mean is, that I was not really owned by any particular doctor. The surgical hospitalist service technically bore responsibility for me, but rather than be the take-charge-of-everything-and-coordinate care doc, they seemed AWOL. GI consulted and did their thing. Eventually, the liver transplant team assumed care as the ducts that were cut were now little nubs emanating from the liver and required two hepatojejunostomies to repair them.

      Despite being a place of healing, there is so much which is vexing about a hospital. Especially at night, a time when I should be asleep. But who can sleep when the IV machine beeps? You are writhing in pain. Nauseated. Have to go to the bathroom. Oh wait, there’s a catheter? Yeah, I’m a doctor and I forgot about the foley.

      Post op the second surgery to repair the first one, a nurse came in to check on the beeping, and I said I was in a lot of pain. All the medicines and local nerve blocks had fully worn off. She noted that I had a PCA pump and could press the button for pain relief. I know how a PCA pump works. I was still asleep from the anesthesia…how was I supposed to press the button? I’m a doctor and I could not do this. How does anyone?

      I knew that the goal of a PCA pump is to have a consistent level of pain relief and avoid big swings of relief and immense distress. But I was not getting any relief beyond the 30 minutes or so after the button was pressed.

      Other medicines were attempted to try to help my discomfort and pain. They all failed to help. Finally, I got frustrated and said, “Can’t I just get a larger dose of medicine less often, so it can get me through the night?”

      I was told that I had to be off the PCA to do so. Certainly, it could not be worse than the complete lack of relief at present, and I cancelled the PCA.

      Boy were the anesthesia pain people pissed at me when they saw me the next day. The pain control group honestly seemed offended at my decision. But my way worked. A “normal” 0.5 mg dose of Dilaudid finally gave me relief, and lasted 6 to 8 hours. A miracle. I was so much happier.

      In wartime, lack of sleep is used as a form of torture, yet during a hospital stay, it is an ever-present unwelcome feature. Like vital signs checks that jolt you awake with the squeeze of your arm. The sicker you are, the more disruptive they were. Also, blood draws to check labs always happened just as I was actually getting a moment of rest.

      Then, after a night of miniscule sleep, the doctors stroll in and ask how you are. I’m not one of the “cheery on the outside, sad on the inside folks.” I’m a straight shooter. How am I? “Tired. Hot (it was summer in the South and the a/c did not work well). In pain.”

      And I had every right to be hurting, after all, there was bile seeping into my abdomen from the cut ducts. It is pretty caustic and it was hitting every nerve on every surface of the peritoneum and causing severe pain. The expression on my surgeon’s face was palpable when I was anything but cheerful. And I was never cheerful, which also made me feel guilty. I made my second surgeon sad. I did. I felt a little bad about that. It did not change my answers though. And his friendly façade splintered a little. Somehow, I was to blame. I did not walk enough. I took too much medicine. I did not eat enough. All kinds of things were suggested for why I was miserable. For a time, I believed that in some way, I was at fault for my lack of progress in my healing. And being a physician, I internalized and overanalyzed it. I had nothing else to do.

      Because of COVID, limited visitors were allowed during more restricted hours. There was a lot of alone time where I’d take a nap and feel like hours had passed but then check the clock and literally it was just ten minutes. I could not sleep my way out of the daily torture. Being a physician made that part much much worse.

      I learned to time my medicines for optimization of pain relief and clarity. I took a night time dose at eleven so I could get some sleep. Even though I was offered medicine in the am, I avoided taking anything after three so I could be alert when my doctors came by. Surgeons round early, well before visitor hours, making me the only person who could ask needed questions and get important updates. After ten am I would take a dose of pain meds. If I had a procedure or something in radiology where I would have to do a bed transfer, I’d take some medicine thirty minutes prior. I never took meds as often as they were allowed by the orders, but I still got reprimanded for continuing to request them. I’m aware that pain medicine affects the gut in all sorts of ways that can slow down progress to discharge. Even when I had a success in directing my care, I would get knocked down for having done it.

      Despite having “the best” care at “the best” hospital by “the best” hepatobiliary surgeon, I continued to have setback after setback. A few weeks after discharge, I was readmitted but this time to the ICU with embolic strokes. A few weeks after that, I was rejected by my follow-up appointment triage for being febrile and hypotensive, and sent straight to the emergency department for possible sepsis. I took everything, did everything I was asked, and as a physician advocated for myself when I felt it necessary, and still I kept getting sicker.

      I developed a massive intraabdominal abscess that remained after two washouts and the strongest IV antibiotics known to man. Between the leaking bile from the ducts post second surgery, the abscess and the caustic, emesis-inducing antibiotics to help cure the abscess, I was perpetually nauseated and vomited up nearly everything I tried to eat or drink. And that complete lack of nutrition was contributing to further decline.

      I was made to believe a lot of that decline was my fault. What I was doing or not doing. I was failing as a doctor-patient. But two very important things happened which finally changed my course.

      First, it took a while but I finally advocated for myself more strongly. I insisted on TPN. I had a lovely PICC line placed for home IV antibiotics that that failed to kill off the infection, and thought why not use it for something that could actually help? And that was what fixed me. TPN put nutrients directly into my veins and allowed the surgeries to finally work, stopping the leaks and curing the intraabdominal abscesses that were giving me pain and daily fevers. Six weeks post TPN and I was up walking around. The six tubes/drains I had to manage daily came out just after the new year; more than six months after my illness began.

      Second, as a result of my continued complications, my care was transferred to a different surgeon. I’m not sure if it was her being female, or just being from the northeast like me, but she got me. She listened to every word, was always compassionate, and never seemed like she had somewhere else to be. When her treatment plan was not working, she sought out opinions from other experts around the country without my even asking. I’ve never forgotten how her care uplifted me. While younger than me, she is my role model of who I strive to be as a physician and is likely the reason why I am still practicing medicine today.

      It was eleven months before I went back to work in some capacity. At first, I did not think I could ever work as a doctor again. I felt like a fraud. How could I tell patients that everything would be alright? That 90% chance of success was good, even though I fell on the wrong end of those statistics time and time again. But being mostly bedridden for five months changed me.

      Once I had healed from my illness and the strokes, I enjoyed the simple independence. I missed feeling useful. And I felt I had much more to give patients. While I don’t work full-time anymore. I work. More importantly, (within limits) I am happy to be at work. Grateful.

      My illness forever changed me, but I try not to have it define me. In some manner, it shapes my future. I’m sublimating this experience into advocacy on a more systemic level, through this article, a few books, and a new role as Physician Advisor for The Brobe post-surgical adaptive clothing company. I still don’t know where my life is headed but wherever the road leads, I am more deliberate in advocating for my own wellness. I have a PCP now. I get preventative care. I enjoy the work of helping patients and saving lives. It is as my friend and colleague Dr Louise Andrew so eloquently stated, “Physician illness is a threat we can learn and grow from.  It is something which will affect us all eventually, and which can actually make us better healers.”