November 2012’s featured person of the month is dedicated to my extraordinary Mother, Mrs. Virginia White Hurston (sunrise 12/30/39 – sunset 11/21/08). She was an educator and served the Beecher Community Schools faithfully for 31 years as an English & History teacher. I affectionately tell everyone that she was my ride or die, #1 fan, loved me best besides God & would lovingly support me even if I was wrong as 2 left shoes. My experiences with her helped to shape me into the woman I am today, with strong family values, faith in God, compassion and consideration for others, and showed me how to stare adversity squarely & firmly in its’ face. She is the sole inspiration for The Empowered Mocha Patient and I need to share her story, as there is much to learn from it.
As my Mommy’s only child, I became acutely aware of her chronic health conditions when our family dynamic changed with the passing of my Father, when I was 11. I recall her having some health challenges when I was a kid, but I was too young to fully understand exactly what the issues were. Later, I came to learn that she was diagnosed as a type-2 diabetic and was insulin dependent. She regularly saw her primary care doctor for symptom management of secondary diabetes related conditions. She was also referred to an endocrinologist that specialized in diabetes management, to help her achieve better control of her blood sugar.
My first clear memory of one of her numerous hospitalizations was when she had to have her gallbladder removed. I was probably 13 at that time. Up until I went away to college, she had another 2 or 3 hospitalizations for broken bones and I would be the primary care giver, once she returned home. During my freshman year of college, she had a mild stroke known as a TIA (transient ischemic attack) and I started tuning in to just how fragile her health was. However, she continued to work. During the ’94-’95 school year she retired through disability because she was no longer able to work due to her deteriorating health from diabetes related conditions.
Her 1st major health crisis occurred in 2001 when she developed pneumonia. She was admitted to the ICU and placed on a ventilator because the infection was so severe & she was oxygenating poorly. Prior to her hospital admission, she had been seeing a kidney specialist (nephrologist) for years to monitor her poorly functioning (renal insufficient) kidneys, due to diabetes. However, due to a necessary use of iodine dye to perform radiology scans during her hospital stay, her kidneys ultimately failed and she required dialysis.
After a lengthy acclimation period, my Mom finally settled into the 3-day/week dialysis schedule, as a way of life. She learned to monitor her fluid intake, became knowledgeable about her dry weight, understood her dietary restrictions and gave her best effort to be compliant to ensure a good clinical outcome. But, there were bumps in the road. Due to poor vascularization (bad veins & blood vessels) there were challenges with getting a permanent dialysis access placed. Her very 1st permanent access graft was surgically placed in her arm & clotted off (occluded) before it could ever be used. She endured another surgery to have an access placed in her upper leg. This access served her until her passing. A suspected complication of kidney failure is the calcium deposits that managed to store themselves in her hips. The deposits became hard nodules under the skin, which eventually erupted on the surface of the skin and became open wounds that required months of weekly visits to the wound care center for debridement (scraping). This was NO walk in the park for her 🙁
Her next major crisis occurred in 2003, when her cardiologist discovered during a heart cath that she had blockages in 3 arteries that would require open heart surgery to repair. She endured a successful surgery to repair the 3 blockages, but her recovery was plagued with surgical site infections at the chest incisions, as well as those on her leg. She spent approximately 6 months of the year leading up to the anniversary of her surgery in the hospital. She required skin grafts to two of her incisions and again became a weekly visitor to the wound care center. At the 1 year mark, she seemed to be on a good road to recovery, post open heart surgery. Over the course of the next couple years, she regained full independence and was even doing some driving.
In August of 2006, life changed drastically for my Mommy when she tripped off the curb while returning to her car after a chiropractor visit. She though she was OK, but unbeknownst to her at the time, she had likely fractured her leg in the knee area. She drove home, which was just a few minutes away & realized that she was hurt when she went to get out of her car. She got out of the car on her injured leg and fell in the garage, hit her head and passed out. When she regained consciousness, she called out for help until the neighbors heard her. We had an ambulance come take her to be checked out at the emergency department. In the emergency department an uncertain sequence of events led to her seizing and going into cardiac arrest. During resuscitation she was intubated and placed on a ventilator, then transferred to ICU. I watched anxiously as doctors, nurses, respiratory and other staffers coordinated her care and got her stabilized. Over the next several days she remained in the ICU, on a ventilator and unconscious of her surroundings. Because of her feisty nature, while unconscious, she removed the tube from her mouth a couple times and it had to be re-inserted. When the doctor decided she was ready to have the tube removed, she was unable to maintain her own airway, due to damage around her vocal cords. I was asked to consent for a tracheostomy tube to be inserted that would allow her to maintain her airway & be taken off the ventilator. I hesitantly consented, unsure whether the trach tube would be temporary or permanent. It ended up being a permanent fixture. She spent another several weeks in the hospital recovering from this ordeal and a difficult decision was made for her to transition to a rehab facility for some intense physical and occupational therapy to regain some strength and independence, prior to returning home.
Unfortunately, over the next couple of years, she was unable to fully regain her independence and spent time trying to recover in a rehab facility as well as at home. In 2008, poor circulation due to diabetes, resulted in amputation of her toes, then a portion of her foot and eventually her leg, above the knee. She eventually succumbed to infection that set in from poor circulation.
For the sake of brevity here, I only shared a portion of the subsequent symptoms of disease my Mom suffered due to type-2 diabetes. What I learned along the journey with my Mom is that a patient always needs an advocate with them as they navigate the healthcare system, be it a Doctor’s appointment, hospital stay, outpatient procedure, or any type of treatment. As my Mom’s advocate, I made the difference in the care she received on more occasions that I can count. I asked questions of everyone that saw and treated her. Wherever she was, the staff knew my face & knew that if they didn’t see me that day, I would be calling to get an update. As long and arduous as the chapter of my life was, spent navigating with her, negotiating on her behalf & advocating for the very best of care, I wouldn’t take anything for the journey. She got to live a life of dignity, with love & respect. And she birthed in me the desire to help others all I can to have the best possible experience when they utilize the healthcare system. So when you’re reading this blog and the resources provided here, know that it’s coming from a place of knowledge, both personal experience and academic preparation.