Editor’s note: This article was written by a guest author for a resident and fellow audience.
With the evolution of patient health literacy and the increase in patient engagement and empowerment, physicians need to learn how to recognize and react to ePatients — that is, patients who are “individuals who are equipped, enabled, empowered and engaged in their health and health care decisions” (Ferguson, 2009). With that in mind, I’d like to share a true story of my experience with the on-call surgery resident shortly after my first breast cancer surgery.
Ya No!
November 23, 2014
Ya, no … That is pretty much what I thought when the resident on call suggested a catheter with a pee bag attached to my leg for the next week or so.
I don’t think she really heard me right. I said I was having difficulty urinating, but I am still doing it! There is still pee coming out of me … perhaps not as much as there should be.
Over the phone, she diagnosed me with post-operative urinary retention. It is not uncommon. Actually, a quick Google search shows that it is the most common side effect of anesthesia. I was hoping to be given some anti-spasm drugs (like you sometimes get for a urinary tract infection), but no such luck. The problem is that the involuntary muscles aren’t working properly. The resident explained that my bladder is still “asleep” — it has not yet woken up from the anesthesia.
Sensing my non-compliance, she asked if I was okay with the plan. I said no, how about we watch and wait — because I am passing some urine, I’m not completely blocked — it is just taking time and not flowing properly. I don’t completely trust the resident’s opinion. I want to hear it from someone with more experience. I have an appointment with my surgeon (whom I trust) tomorrow at 10 a.m. So, the resident and I negotiated a plan. I would watch and wait, but if I have a window of six to eight hours where I don’t pass any urine or if I feel my bladder is full or distended, then I’m to go to an urgent care center and ask for a catheter and leg bag. I must give the resident credit for detecting by the sound of my voice that I had no intention of just going in and getting the catheter and bag. We spent a good few minutes discussing the watch and wait option, so I know what signs mean I need to go and get it dealt with.
Now that I’ve had a little more time to process the idea, I can deal with it. If my surgeon says I need it, I will get it tomorrow and deal with it while travelling (oh joy). The resident said that it would stay in for a week, and then they would do some test to see if my bladder was working properly (voiding) so that it could be removed.
On the pain front, I’ve started to wean off the pain meds. I’m on a lower dose, less frequently, and so far it is working out fine. I caught myself last night unconsciously doing my normal inspection of my breasts, and I accidentally squeezed one of them a little. Hurt like …
… won’t be doing that again anytime too soon!
Preliminary Pathology and Thoughts from My Surgeon
November 24, 2014
Mostly today’s visit was just a checkup before flying to Canada on Wednesday. I wanted to make sure everything was healing as expected. (It is.) My surgeon took a bunch of pictures of her handy work for both my file and for research. All is well.
The pathology isn’t in yet, but some very preliminary results were shared. The preliminary results of the nodes are negative. In addition, the preliminary results of the tissue under the nipples are also negative. This is good news. If there is any cancer in the tissue under the nipples, then the nipples will be removed when I have the mastectomy on December 17. If the tissue under the nipples remains negative, then the goal will be to keep the nipples as part of the surgery December 17 (bilateral mastectomy with immediate deep inferior epigastric perforators flap reconstruction, known as DIEP flap reconstruction). We will get a full pathology report on December 4.
When we discussed my bladder issues, my surgeon made an interesting comment. She commented that maybe it is because she is a older doctor, but she finds that sometimes she needs to remind residents to consider the patient perspective before making recommendations. This was a classic example — before suggesting a catheter and pee bag for a week, think about the patient impact. My surgeon agreed with the watch and wait approach given my upcoming trip, and if it is still a problem when I get back, she can refer me to urology for a consult. She would rather give me a referral to a specialist then put me through unnecessary discomfort (nevermind impact on ability to exercise) of a week with a catheter and pee bag. It really confirmed that I had chosen the right surgeon — one that looks at me as a person, and my entire well-being, not just my symptoms.
In the first story, Ya No…, the on-call resident, who did not know me, suggests something that I believe to be overly cautious given my symptoms. I highlight how I felt like the resident was not listening to me when I described my actual symptoms. However, I must credit the resident for detecting the non-compliance in my voice. The resident listened to my logic and negotiated a plan with me — one that addressed her concerns about my health, but also addressed my quality of life concerns. This story also speaks to how I, as a patient, felt empowered enough to suggest an alternative approach to the problem. That is a reality of ePatients today — as ePatients, we feel empowered to discuss alternative treatment paths with our care teams.
In the second story, Preliminary pathology and thoughts from my surgeon, the attending surgeon, with whom I was a regular patient, appreciated the impact of the suggested treatment on me as a person. She saw beyond my disease and symptoms and considered my quality of life when making recommendations.
Another important part of this story is the sense of trust I felt for the different physicians. When the unfamiliar resident made a suggestion based solely on my symptoms, I did not feel I could trust her. When my chosen surgeon considered me as a person, rather than just seeing my illness, I felt a much greater sense of trust in her approach to the problem. As an ePatient, I am more likely to follow the directions of a physician whom I trust than to follow the directions of one whom I don’t trust.
Contributing Writer
University of Ottawa, Canada
Rebecca J. Hogue (Becky) is a prolific blogger, currently sharing her lived experience as a breast cancer survivor (BCBecky.com) as well as her academic and teaching experiences (RJH.goingeast.ca). In addition, she and her husband have a travel blog describing their 16-month journey around the world without airplanes (GoingEast.ca). She is pursuing a PhD in health professions education from the University of Ottawa (Canada) and is an Associated Lecturer at the University of Massachusetts-Boston. Her research and innovation interests are in the areas of ePatient storytelling (pathography), blogging, and the development of ePatient health literacy. Rebecca currently resides in Sunnyvale, California.
