progress report

a few months ago, i wrote about a doctor's appointment that left me feeling disrespected, disappointed and scared. i laid out a plan of action to address my feelings. it turned out to be a pivotal moment for me and i want to lay out my progress since then.

here's what i sought out to do:

1. write an email to my med student shadows to express my feelings about the appointment and convey that it was an anomaly ----- check.
2. investigate clinical trials on mrsa and pursue promising opportunities ----- check.
3. talk to my doctor about potential consults regarding my mrsa management ----- check.
4. figure out how i wanted to deal with my disappointment in my doctor ----- check, but an abstract one.

more detailed explanation:

1. connect with the med students

emailing my med student shadows gave me tremendous immediate relief. the unsettling doctor's visit was the first they attended with me and i was very disappointed that they witnessed such an anomalistic visit as their first impression of a CF doctor-patient dynamic. overall, i have a very positive relationship with my doctor built on trust and respect and that is a big part of what i strive to impart to them. it upset me that they saw my doctor treat me in such an uncharacteristically objectifying and disrespectful way.

in response, the med students suggested that i do my exam alone with my doctor and have them enter for the discussion and planning portion only. that way, they still gain exposure to the medical side of chronic illness management while i'm able to preserve the normal dynamic between me and my doctor, particularly during the exam. i'm happy to report that we have done this ever since and it has worked exceedingly well.

2. investigate mrsa clinical trials

shortly after writing that post, my family and i found a clinical trial on inhaled vancomycin in the pilot stages on the government's clinical trial website. i emailed my doctor to see if i would be an appropriate candidate. after speaking with the principal investigator, he determined that it was worth pursuing once they start recruiting.

3. consider a consult

at my next visit, i asked my doctor about having a consult with another CF doctor. it wasn't that i didn't trust my doctor or his treatment decisions because i very much do, but given the difficulty we were having managing my infection, i thought it could be worthwhile for a second pair of expert eyes to review my case. sometimes fresh eyes can magically shed light on a situation in a way that enmeshed eyes cannot.

i was overjoyed when my doctor fullheartedly supported the idea. he ran off a list of CF doctors he thought would be particularly helpful to my case. in the end, we narrowed the list down to two -- an infectious disease doctor at columbia presbyterian with a specialty in CF and a long-time, well respected CF clinician and researcher at unc who i had seen once many years before.

i had an appointment with the doctor at unc in mid december. my appointment lasted over 3 hours, nearly all of which was spent with the doctor. he methodically covered every single little detail of my case. i've truly never had such a thorough review of my health history in my entire life. as we were concluding the long medical history, he commented, "you're managing your health remarkably well, emily." after watching my lung function creep downwards no matter what i did and despite my own knowledge of how obsessively compliant i am, somehow hearing those words from him meant a lot. in my head, i gave my self a pat on the back.

he proceeded to summarize "his findings" with a state-of-the-organ address of sorts. we discussed how to develop a doable exercise program that didn't sideline me with joint and muscular pain and he suggested i try 12% hypertonic saline, which i have now implemented in my routine. i've also been regularly excercising without any major pain.

the majority of his recommendations focused on my lung issues, which is what we were most eager to hear. he talked about oral/inhaled antibiotic options for mrsa and he suggested that anaerobes might be contributing to my lung troubles and not showing up on my sputum or bronchoscopy cultures. he thought i should try a couple of antibiotics with good anaerobic coverage. perhaps what was most helpful is when he laid out a detailed course of action for me that involved changing only one antibiotic at a time to isolate variables and see their effects on me and my lungs.

lastly, we decided to establish an ongoing consult relationship where i visit every 3-4 months and he collaborates with my current local doctor on treatment plans and clinical trial opportunities. meanwhile, my local doctor will continue managing my care and making the day-to-day treatment decisions. i left the appointment feeling really positive about the new team approach and hopeful about my care plan, which i hadn't felt in quite some time. i return to north carolina at the end of march for my second appointment.

4. address my disappointment with my doctor

this issue was a little more complicated than the rest. i'm all for addressing issues head on and talking things out to fully resolve them, but i've found that in certain situations, the most powerful things can sometimes be left unsaid. sometimes the recognition of the wrongdoing doesn't necessarily need to be articulated in words.

when i went back for my next visit, i strongly sensed there was an unspoken understanding about the things that went wrong during the previous visit. i felt like our connection had been re-established and it seemed excessive and unproductive to restate it outloud. i might not have checked this item off of the list quite as explicitly as the rest, but i walked away feeling like we resolved the issue and were ready to move on. i've been back to clinic for a number of visits since then and it is clear that our relationship is back to normal or maybe even better than before.

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with each check comes a feeling of contentment, empowerment and pride that i am acting as the best possible advocate for my health and overall wellbeing that i can. i know i won't always get it right on the first try or act in ways that make me proud or avoid moments when i feel completely flustered and out of control, but i promise that i'll always keep trying, i'll always keep reflecting and i'll always keep striving to learn and grow. that's my promise to me.