From Caregiver to Patient Advocate: My Journey
I was in my first year of pre-medical studies when my husband, Larry, was diagnosed with Congestive Heart Failure (CHF). When you have a chronic disease, it’s not the disease that derails your life; it’s the associated comorbidities. Every day I went to classes never knowing if today we would end up in the ER…or worse. Doctor appointments were scheduled around classes, projects, and exams until we reached the point where classes, projects and exams had to be scheduled around hospitalizations. My formal education was taking a back seat to the hands on education I was receiving at the hands of my husband’s doctors. I learned to recite a pharmacopeia of drugs with their associated q’s and t’s, BID’s and mg’s. I learned the complicated names and associations between Larry’s comorbidities and, on more than one occasion, identified the correct differential diagnosis despite the provider’s insistence that perhaps I should go wait in chairs.
I learned to participate in Larry’s grand rounds and I developed an unerring instinct for knowing which RN’s and CNA’s would work best with him. In the meantime, I studied for my MCATS; to save time, I took up residence in Larry’s hospital room as he recovered from his 10th, 11th, and 12th MIs and his subsequent 12th and 13th stents. I took the MCATS the same day I brought Larry back home. Ten weeks later, I received the test results and knew that I had a good chance of getting into medical school. Little did I know how much my life was going to change in the very near future.
CHF and diabetes are close bedfellows and Larry’s case was no exception. A blister on his foot, discovered during one of my routine foot checks, quickly turned into an open wound that resisted all forms of interventions. It degenerated into wet gangrene and in January, a below the knee amputation (BKA) was agreed upon despite his ever decreasing odds of recovery due to his failing heart. I had quietly graduated with my undergrad degree the previous month and was recovering from an open biopsy on my tibia. My daily trips to the hospital to be at Larry’s bedside were a bit more adventuresome with crutches, but it allowed me to see the good in people as they did their best to help us in any way they could. Larry’s recovery was an arduous one with a week-long excursion through ICU for sepsis that left him in a permanent sun-downer state of dementia—not a terrible place if you thought the ‘70’s was a great decade to re-live.
Larry died six months later. During those six months he learned to walk again with use of a walker and celebrated his final birthday surrounded by more than 100 people whose lives he had touched in both simple and profound ways. Ten days after he died, I received confirmation that I had been accepted into medical school. Orientation would commence in 3 weeks. I briefly considered what it would be like to accept but I had lost the strength and desire to pursue clinical medicine. Instead, as I found my way through the fog of bereavement, I discovered that Larry had left me with an unintended gift: experience as an advocate and the empathy for those who need one. Armed with this shift in paradigms, I enrolled in a Master’s program of Health Advocacy. I had discovered my true calling and passion for life.
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