Keys to any doctor's appointment, lupus, cancer, or otherwise - Be Organized, Informed, and Engaged!
As I enter what will be my 18th year with lupus, I realize how much I've learned about living with my illness, and how many opportunities I have to put that acquired knowledge into practice each day. Recently, these "lessons learned" have taken on a new twist, as I accompany my dear old dad on his journey with brain cancer. I am honored to be by his side, and proud to be able to put my honed patient skills into practice. He and I agree it's time to put my 18 yrs of "illnessing" to good use.
Having just finished 6 weeks of simultaneous daily radiation and oral chemo, with weekly doctor's visits, weekly labs, three weekly nurse visits, and over 40+ in-home therapy appointments, it became clear that the patient and/or caregiver has to be organized, informed, and engaged. (Ahhh...the partial subtitle of Chapter 2 of my book, Despite Lupus!) More than ever, I realized how each interaction with a medical professional is an opportunity - to learn, be heard, and to progress. And because this was uncharted territory for us (isn't it always??), we had to ensure we took advantage.
Given my dad's cognitive challenges brought on by the tumor, surgery, and radiation, this task defaulted to me, his primary caregiver, as well as my sister, who accompanied him on many of his appointments.
It was a big job, but I tried to approach it like I did my lupus appointments, employing simple strategies to give my dad the best chance for success, and optimize his appointments.
A few things in my Doctor's Visit Toolkit:
Be Prepared - My sister and I got into the great habit of texting each other with our list of questions or items to cover before each doctor or nurse's appointment. Whoever was present at the appointment was tasked with getting everything addressed. The doctors responded well to our organized and concise approach, and we were able to stay on track during the appointment. As it often happens without a prepared list of items to cover, you think of things as the doctor is speaking, but by the time he or she is finished, your mind has wandered, and the only thing you remember to ask is the last thing mentioned. Being prepared, we were able to get a ton accomplished at each visit, and I appreciated the checks and balance system we had between us, ensuring we weren't missing a thing.
Pay attention - Take notes - I figure if you are paying attention during a visit, you are bound to take notes. Because my sister and I job-shared the management of my dad (and mom's) healthcare visits, it was essential that notes were taken so accurate info could be exchanged. Often, I would send an immediate screen shot of my notes as I was leaving a doctor's appointment or as a therapist was walking out the door. There would be time for explanation later - but at least the essentials were down on paper, and shared immediately.
In addition, I referenced my notes constantly - checking plans for medicine tapers in between appointments, relaying progress reports or test results between health care professionals, or applying what had been learned during in-home therapy. While I had (mistakenly) expected each of his in-home physical, occupational, and speech therapy sessions to mean a 45-minute reprieve for me, I quickly realized that I needed to be present. Sometimes, it was to help interpret for my dad, or transition him to working with the therapist. Others, it was simply to take notes. Not only did I notate how to carry over or apply his therapy, but I also jotted down exercise phrasing, cues or lead ins, and strategies used for sidestepping obstacles or patient push back. My dad would even turn to me and say, mid-session, "Now, did you write that down somewhere?", if the therapist had said something he felt was noteworthy. Given his compromised short term memory, coupled with his inability to read at the moment, he, of course, forgot about the notation almost immediately. But that's an even bigger reason for writing it down in the first place, right? This principal can be applied to lupus brain fog, for sure!
(As an aside, my presence also strengthened my dad's trust in me, and my ability to carry out the exercises when therapists weren't present. He knew I had been right there with him, a supporting member on his team. It made practicing and putting the therapies into place a whole lot easier.)
Speak up - I have always been a huge proponent of giving examples to doctors when explaining symptom activity. I think it gives both parties a workable starting point, and it ensures that what you are trying to describe is accurately received. For example, I can say my joints hurt, but when I illustrate by saying I can't hold a fork to eat, grip a steering wheel, or buckle my seat belt because of the pain, I think it adds dimension, and clarifies exactly how bad the pain is.
The same was true with my dad. At one point during radiation, his doctor recommended keeping his steroid dose (which helps with brain inflammation, and thus, confusion) as is, even though I explained my dad was experiencing what I felt were abnormal bouts of confusion. The doctor said my dad is bound to be confused, explaining that heightened confusion is normal at this stage of radiation. In an effort to make sure that our versions of "normal" were the same, I cited three examples of confusion my dad was experiencing - two which were occurring during his morning routine, and one during mealtime. In a calm and receptive manner, the doctor declared that, no, those were definitely not normal, and he recommended increasing his steroid dose. I walked away happy - not because I wanted increased steroids (quite the opposite, given my own experience with prednisone!) - but because we were able to establish a baseline from which we could both work. We continue to reference his levels of confusion as such, and so far, so good!