Be Your Own Best Advocate

How questioning (and pushing) the experts saved my mom's life

My son Alessio, myself, and my mom Jean Motz.

Mike Rowe’s “Coffee with My Mom” edition of his podcast The Way I Heard It is a delightfully casual catch-up conversation with his always entertaining 84-year-old mom, Peggy Rowe. In this particular klatch, episode 373, she was relaying the harrowing story of her husband’s heart attack this past Christmas. What caught my attention was her description of the week leading up to his cardiac event. I’m paraphrasing, but the gist was that he had been having textbook symptoms of impending myocardial infarction, including pain, numbness in the arm, indigestion etc., and yet the expert who examined him chalked up to acid reflux, prescribed Mylanta, and sent him on his way.

In hindsight, she lamented that she did not push the person a little more because on Christmas, her husband woke up in true distress. He was having a full-blown heart attack. Fortunately, they lived in a retirement community staffed with a medical center, so stabilizing assistance was almost instantaneous. Once transported to the hospital, it was discovered through an Angio cardiogram that he had a 98% arterial blockage. That’s significant! Too significant to merely explain away as mere “indigestion.”

My seminal experience
Peggy’s story brought to mind the time a similarly distressing experience with my mom about 3 years into her 13-year stay with us. She was having severe pain in her upper diaphram area and was not looking at all well. I called 911 and we were off to the emergency room where she was diagnosed with a gall bladder attack, coupled with a mild heart attack. Oh geeez. Because of the heart attack, she needed to be stabilized before addressing the gall bladder, which needed to be removed. In the meantime, however, because of the gook in her gall bladder, she went septic and landed in the ICU.

To paint the full picture for you, at this point my mom was an 87-year-old woman, very overweight (technically considered “morbidly obese,” but I loathe that term), and in a very compromised physical state. Sepsis is a dangerous condition in which the body has a hyper response to an infection (in her case, the gall bladder gook) that can result in impaired blood flow to vital organs, leading to organ failure and tissue damage. In other words, the textbook said she most likely was a goner.

About mid-afternoon on that first day in the ICU, Andrea was with me when we were approached by two kindly looking gentlemen and summoned into a quiet room for a hushed discussion. Turns out the older man was a minister of some sort, and the younger one was a social worker. Together they were the palliative care team. Palliative care. Hmmm. Sorry, I don’t know what that is. I’ve got a toddler at home, so if it’s something to do with Thomas the Train, I’m with you. But palliative care, I’m lost.

Seeing the blank look on my face, they explained that palliative care is the step before hospice and is primarily focused on making the patient comfortable. Comfortable. I was still confused; my mom was in the ICU, she needed treatment, not comfort. It took a beat to click into place. Simultaneously, Andrea and I looked at each other and blurted out with incredulity, “You think she’s going to die?” We actually chuckled at the notion, shook our heads, and continued with perfect surety, “She’s not going to die!” By the looks on their faces, it was clear that our synchronized reaction shocked them. I’m honestly not sure what came over us, but we were confident of our position and told them in no uncertain terms that she was not going into palliative care, and that we wanted her treated to the fullest extent.

Well, this was beyond their scope, so they summoned the attending lead physician. A very nice well-coiffed woman who sympathetically relayed that all 5 of the white-coat specialists involved—the infectious disease expert, the cardiologist, the pulmonologist, the surgeon, as well as herself—were very concerned, given my mom’s age and overall physical condition, that she certainly could not withstand aggressive care and would not emerge from this sepsis state. The odds were stacked against her.

I’m grateful that Andrea was beside me because I’m not sure I would have handled it as well on my own, but with his support I pleaded my mom’s case. I told the skeptical doctor that as my mom lived with us, we knew her overall constitution very well, and despite appearances, she was healthy as an ox, rarely sick, and stubborn as a mule. We had an unshakable belief that if given the opportunity, with the “aggressive” measures she would come out of this.

We asked the doctor to administer the typical protocol for sepsis that she would give the average patient, and to allow my mom a chance to respond. Reluctantly, the doctor agreed and put the kindly palliative care team on hold. The next morning, I wanted to be there for rounds, so I arrived at the hospital about 7:00 AM, well before visiting hours. I walked into mom’s ICU room to find her sipping broth and smiling, unaware of her serious condition or the critical care wing she was in. The nurse was incredulous, shaking her head as she said that my mom woke up hungry. Yup. That’s my mom.

The 5 white coats came in for morning rounds with a group of eager med students in tow. More shocked faces and shaking heads. I suppressed my inclination to say “I told you so” and instead thanked the lead doctor for giving mom a chance to rebound. We were off to the races. The team developed a new plan of care that included gall bladder surgery, clot mitigation protocols, cardiac treatment, and extensive follow-up care. Six months later, my mom was back to normal, weaned off of everything except a low-dose heart medication.

My hardy mom lived 11 more years after that episode, and I’ve carried forward many valuable life lessons from that experience. Two in particular I think about often: question and advocate. Questioning is part of my designer’s nature, but advocating is by no means comfortable. Yet, given my innate quest to strive for excellence, when taken part and parcel, they become a very powerful duo.

Fear and intuition
I find it curious that we now have more information at our fingertips than at any other time in human history, yet our overall health and wellbeing continue on a downward trajectory. I’m sure that if we delve deep we could uncover many of broad-based societal influences that ail us… but in my own personal experience,  the top potential road blocks when faced with health issues are: a fear of questioning the experts; and not trusting my intuition.

Society puts experts on a pedestal, making it very difficult to question people in authority. But with age I’ve come to realize that those experts are just people, and people can be wrong. I’m starting to ask myself, “What’s the worst that could happen if I ask a question?” and “What’s the best that could happen?” The worst that could happen is that I get a weird look, a negative comment, a little embarrassed… so what? I’m learning the best far outweighs the worst.

The natural follow-up to questioning is making an actionable request. I’m not a pushy person by nature, in fact, I’m fairly reserved and am happy in the backseat most of time. But there is great value in gently pushing to move the ball forward. So I’ve pushed myself (pun intended) to ask “What if…"? , “Can we please try…?” and “What more can we do?”

Intuition is a powerful and proven tool inside each of us. Even though I am a firm believer in the validity of our gut reactions, I’m still working on not dismissing my sometimes teeny inner voice. Every single time I’ve ignored it, I’ve paid a price. I often reflect on that formative lesson Andrea and I learned while sitting in that badly lit hospital room; thank goodness the gravity of the situation amplified our instincts and propelled the words to rush out of our mouths! It was a seminal learning moment that I’m trying to harness in less dire circumstances—when I need to advocate for myself…it seems to be easier to do so for others, but I’m getting better!

Life altering
I wholeheartedly believe that Andrea and I extended my mom’s life by 10 years that afternoon. If we had submissively acquiesced to the well-meaning palliative care team, my mom would have surely succumbed to the toxins ravaging her body. I’m not patting myself on the back; it was simply the right thing to do and thankfully we had the spirit to insist upon action.

It has motivated me to be more quizzical in my own life: what other options are there for any particular issue, what more can I be doing, who else can I tap into, what stone haven’t I turned over? And when faced with any health situations for myself or our family, now my mindset is always the first conclusion may not be the best, or the last. I’m going to explore alternatives and push for better solutions, all in a quest to live well, age great.

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