The Heart of the Matter: My Medical Journey
“If we don’t treat this problem, you’ll be dead in two years,” said Neville Mistry, MD, interventional cardiologist specialist with Warm Springs Cardiology Clinic in Las Vegas.
Surprisingly, this ominous prediction did not fill me with dread because he had prefaced it with a thorough explanation of my condition—aortic valve stenosis or aortic stenosis—and the remedy, a minimally invasive procedure, called TAVR (transcatheter aortic valve replacement).
I first learned of this life-threatening heart condition two months earlier--in July 2023--during a routine visit with Dr. James Tsung, DO, my primary care physician at myGeneration Senior Clinics, informed me that his review of an old heart scan (taken in 2019 while the care of a male nurse practitioner) indicated a severe heart murmur; consequently, he referred me to a cardiologist.
I had considered the nurse practitioner, and a subsequent primary care doctor, excellent clinicians, yet neither had identified, nor advised me, of the problem.
Prior to my diagnosis, a heart murmur had been the least of my health problems, or so I thought. For the past four years, my most daunting health problem has been osteoarthritis in my left knee, causing inflammation, stiffness, and a slight deformity. Initially, I wore a knee brace; however, during the pandemic, the problem worsened and led to reliance on a cane and eventually, a walker.
Intense back and hip pain prevented me from standing for more than a few minutes at a time or sitting for extended periods, so, I gave up driving and stopped cooking, which curtailed my independence and social life.
Due to the severity of the heart murmur, doctors were surprised that I had no symptoms, such as chest pain, dizziness, swollen feet, fainting, or shortness of breath. I attributed this to Divine Protection, but my limited mobility was a factor.
Before I continue, however, here is some background.
I have always been proactive regarding my health. I ask questions, keep abreast of my meds, and view my doctor as a partner. Likewise, as a former health editor, yoga instructor, and publisher of a national health newsletter for African Americans, I have a basic understanding of medical anatomy and physiology. (For a brief time, I enrolled at Columbia University to pursue a Master of Science in Nutrition and Physiology.)
Despite this prior knowledge, I never fully appreciated the complexity of that fist sized organ: the human heart. That would soon change.
I learned that four valves (or “doors”) in the heart control the direction of blood flow and prevent blood from flowing backward. Over time, they can calcify, become narrow, and restrict the body’s blood supply.
In my case, the aortic valve that separates the aorta and the ventricle (or left lower left chamber of the heart), was heavily calcified. The medical term for this: aortic valve stenosis, which limits the ability of the aorta, the largest artery, to deliver oxygen-rich blood to the brain, muscles, and other cells.
Hence, the urgency to act quickly.
The Journey
In August, my two-month TAVR journey began under the excellent care of Dr. Mistry, and Quyhn Feikes, MD, cardiovascular and thoracic surgeon, and their teams.
In preparation for TAVR, I underwent blood and urine tests, an echocardiogram, EKGs, a lung function test, carotid ultrasound, and cardiac catheterization (to examine my heart’s blood vessels).
Drs. Mistry and Feikes (who performed the two-person procedure) advised me of potential risks associated with TAVR, including stroke, heart failure, bleeding complications, even death; thankfully, I had confidence in their surgical skills.
According to the Mayo Clinic, “(TAVR) is a minimally invasive procedure to replace a narrowed aortic valve that fails to open properly …. In this procedure, doctors insert a thin, flexible tube into the leg or chest and guide it to the heart.”
“Game Time”
On September 15, I entered Spring Valley Hospital whose website touts the benefits of TAVR, “(It) transforms a large operation into a …. procedure with reduced pain, blood loss and recovery times.”
Throughout the months preceding the TAVR, my daughter, Denise, who lives in North Carolina, and my granddaughter, Shanee, who shares an apartment with me in Vegas, were extremely worried about the dangers of the procedure, and believed that I downplayed the seriousness of my condition.
On the contrary, I chose to have a positive outlook during the weeks leading up to the procedure, and I did not want others’ fears to infect my state of mind.
On the day of surgery, my sister, Terri, who lives in Vegas, and another granddaughter, Eve (who flew in from Virginia) joined Denise and Shanee at the hospital. As they wheeled me into the operating rooms, I joked, “It’s game time.”
Approximately 90 minutes later, I awakened in the intensive care unit with tubes in both wrists, hooked up to a heart monitor and with an IV. Immediately, the nurse cautioned me to remain prone. “Do not lift your head or your knees, even a little bit.”
On my back for the next seven hours, I suffered severe spasms in my left leg (unrelated to the surgery), a persistent ache across my mid back, and the inability to adjust my position for relief. I also had to be careful not to disturb incisions on either side of my groin.
At one point, the heart monitor began to beep incessantly, indicating a drop in blood pressure. All I recall of the next few minutes was sweating profusely and drifting in a semi-conscious state. (I have since imagined that this is what dying feels like.) My family panicked, and Denise was in tears, as medical staff worked to raise my blood pressure.
Twice during the overnight stay, I had to pee into a urinal designed for women; nonetheless, I ended up drenching the bedding. Though unhappy with my helplessness, I had no choice but to allow the nurses and my family, especially my granddaughter, Eve, (who cleaned me up after a bowel movement) to do what I could not.
ICU doctors discharged me the following day with instructions to keep the incision sites dry, to avoid lifting more than five pounds, and to take a prescribed blood thinner. They said that I could resume normal activities within a week.
My daughter and granddaughters did everything to make me comfortable even though I did not experience any pain.
Afterwards
A few days after coming home, I experienced inexplicable anxiety and depression. Thoughts of dying plagued me. On September 20, I wrote in my journal, “I really feel frail and more vulnerable to various germs … I am afraid of my heart now. I don’t feel well or better. I wonder if I’ll ever feel ‘normal’ again.”
These emotions seemed irrational (considering the success of the surgery), and I could not understand what triggered them. Eventually, I shared my feelings with Eve, and later, with Shanee, both of whom listened without dismissing my feelings or my tears.
I decided to google whether such feelings are normal after TAVR. I learned my experience was not uncommon. According to The American Heart Association, “Mental health issues (anxiety and or depression) are common (20%) following aortic valve replacement.”
The Australian Centre for Health reports, “Around 75% of people experience the ‘Cardiac Blues’ after a heart event, with unexpected changes in mood and emotions, including sadness and tearfulness, anger and irritability, worry and anxiety …”
And then, there were those scary moments both pre- and post-op when I contemplated my mortality and wrestled with the big questions: Would my dying be sudden or prolonged? Does it mean the end of all consciousness? Is there an afterlife? Is there a God?
Of course, I have no answers, just my faith.
Road to Recovery
Although Dr. Mistry released me from care until August 2024, occasionally I worry whether the new valve will hold or get infected. (For example, I must take an antibiotic prior to any dental work or cleaning to prevent infection.)
The most positive aspect of post-recovery is cardiac rehab sessions at Good Shepherd Rehabilitation, under the encouraging and watchful supervision of a physical therapist, physical therapy assistants, and a nurse. They monitor my heart rate, oxygen uptake, and exercise progress.
It is during these twice weekly sessions that I feel most optimistic about one day resuming activities that I love: exercising, walking, and hiking.
2023 Wista Johnson (Reprint by permission only.) Photo: InspiredImages (pixabay.com)