the truth is that it has taken me the past few weeks to come to terms with that. i felt defeated. i felt like all this work i've done to achieve peace with where i am in life and with CF came crashing down on me when it was put to the test. my appointment threw me off balance and i was, no, i am struggling to re-establish it. i've been questioning if my perceived inner peace is merely a constructed illusion of control and acceptance or if this latest incident can somehow fit into my greater understanding of myself and my life with CF.
i'll backtrack to explain what happened.
after 3 weeks on zyvox, a powerful, not too commonly used oral antibiotic to hit mrsa, i was feeling pretty damn good. in fact, i haven't experienced such a significant improvement from an oral antibiotic in, honestly, at least a decade. i was sleeping well. i was waking up not needing to cough. i didn't even need to clear my throat when i answered the phone. as an maoi inhibitor, i did have to avoid foods with large amounts of tyramine, including aged cheese, raisins and a few other favorites, but, let's be honest, i'd trade delicious gorgonzola for infection management from an oral antibiotic any day of the week!
the cascade of suboptimal events leading to my bad clinic visit started when i entered the lung center and was greeted by two first-year med students who were assigned to follow me throughout their med school career to learn about life with a chronic illness. i volunteered to participate in this program because i wanted to humanize chronic illness in the eyes of these young, often naive students who will be our future doctors. in fact, i was excited to participate and expose them to CF firsthand, but i wasn't prepared for them to show up at my clinic appointment, especially unannounced. apparently there was a miscommunication from the program coordinator and they didn't get my email address in advance to ask if they could attend my appointment. instead, they just showed up. this flustered me a bit, but once we started talking, i felt fine. this constituted event #1.
event #2 occurred when i was called back for vital signs and my blood pressure, which runs abnormally low, was high. we switched from the kids cuff to the adult cuff, which is what they usually use, thinking the cuff could be the culprit. although the reading came down 10 points, it was still squarely in the "high normal" range, which was unchartered territory for me. it suddenly dawned on me that perhaps my elevated blood pressure resulted from the zyvox. i was unnerved and quite surprised, but still, i was fine.
the med students came back to my exam room with me and started asking questions. for even their most basic questions, such as "what does your daily routine consist of," i felt obligated to provide an honest and heartfelt response that accurately depicted my life with CF. i tried to convey the depth and range of daily CF responsibilities, including minor but time consuming things like washing neb handsets, and how variable they are depending on how i'm feeling. by that, i meant not just that they change when i'm in the hospital, but that when i'm under the weather, i become so lethargic that even seemingly mindless daily CF tasks become far more challenging. in the middle of our conversation, in walks my doctor and a female doctor i've never met before. enter event #3, the event that finally put me over the edge.
my doctor quickly mumbled the female doctor's name and said she used to be head of the center many years ago. nobody asked if it was ok for her to enter or explained the reason she was there in the first place. there were now 6 people in my small, cramped exam room. of these, 3 were people i hadn't known 10 minutes before. keep in mind that this was a critical, anxiety-laden appointment, as we were discussing what my new treatment plan would be moving forward given the unusual results of my bronchoscopy.
as soon as my doctor started talking, i could tell that something was different. his entire approach seemed different. he rattled off questions he's never asked before in a formulaic way that seemed so unlike him. he raised emotionally charged issues that he has purposely approached far more delicately and respectfully in the past. he suggested a new antibiotic rotation plan that seemed poorly thought out and he scoffed at my attempt to better understand his logic (probably because there wasn't much). i almost felt like he was putting on a performance. i don't know if it was for his colleague, to whom he kept fielding questions and asking for support, or the med students who presumably viewed him as the expert, but i do know that this wasn't the same kind, accommodating, respectful and empowering doctor who usually enters my room.
in the 5 years that i've gone to my doctor, i've never seen him act this way before. on a personal level, i felt shocked, betrayed and disappointed. i felt like he wasn't really listening to me. i felt like a stand-in patient with whom he had no personal connection or relationship. i felt objectified, disrespected, hurt and pushed aside.
the truth is that i also felt disappointed that this was the med students' first exposure to a CF patient-physician relationship. it contradicted every lesson i wanted to teach them. the things i appreciate most about my doctor and hoped they could learn were specifically not exhibited during this visit -- his genuine respect for me, my life and my choices; his willingness to accommodate me medically and logistically; his desire to help me live my best life; his encouragement of my inquisitiveness; and his appreciation for my desire to be an active, educated and contributing partner in my medical care.
i walked away from my appointment fired up with anger and feeling betrayed and disrespected. as soon as i got in the car, tears flooded my eyes and i broke down. for the first time in many years, i felt alone in my medical care and scared. i was upset that i had not better advocated for myself and i felt the only way to restore my dignity was to do something extreme, grandiose, loud and clear to properly express how wronged i felt. i considered everything from emailing my doctor to emailing the other doctor who sat in on my visit without my permission to altogether switching CF centers.
well, thank goodness for my mom. over the course of an hour-long conversation filled with tears, rants, pain, fear and anger, she finally calmed me down. she assured me that my family would unconditionally support me, even if i chose to change centers, and she urged me to take time to reflect before acting. i think mostly what she did is help me re-claim my sense of autonomy and self-determination in my medical care.
i developed the following plan of action
i wrote the med students an open, honest and exposing email explaining that my doctor's behavior was uncharacteristic and how upset i felt that this visit was their first impression of a CF patient-physician relationship.
i decided to stay put at my center for now, but actively investigate clinical trials on mrsa and CF and pursue any promising opportunities, at my parents' suggestion.
i decided to ask my doctor if there are other CF doctors who might be worthwhile to contact or see since it seems we are at somewhat of a loss for management options.
as for how to address my personal disappointment with my doctor, well, i'm still working on that one. what i do know is that i will say something and it will be in person, probably at my next appointment. the rest has yet to be determined.
what amazes is me is that as shattered and disempowered as i felt in the moments following my visit, all i needed was time. with time came clarity -- on how i felt, how i wanted to respond and how this incident could temporarily disrupt my inner balance without demolishing it completely. time didn't diminish any of my immediate emotional responses, but it did enable me to craft a thoughtful, constructive and dignified response that will hopefully prove more effective than if i had acted impulsively. most of all, it empowered me to realize that i possess within myself the resources to turn a bad situation around... and i will venture to say, that realization completely fits into my greater understanding of myself and my life with CF.