My name is Kim Caroline and I’m 38 years old.
I grew up corn-fed and silver-spooned in Indiana, inheriting privilege and a penchant for self-reinvention. My father, “Heir Doktor” was a poor German immigrant who ripened into a neurosurgeon, tennis player and Civil Rights advocate. My mother, the daughter of an artist and business professor, was a brilliant biologist and interior designer who knows the nomenclature of anything living or gold-laden. My brothers and sister have similar spirits of courage, desire and reinvention.
I earned an undergraduate degree in Humanities from Indiana University and a graduate degree in American Studies from Columbia University where I lived adjacent to the silvery Twin Towers of the World Trade Center. After college, I worked for the US Judiciary Committee and two Midwestern congressmen on Capitol Hill. My best memory as a Plebe is that I pushed legislation that became law combating telemarketing crimes against the Elderly.
I’ve lived an extraordinary life, (as defined by American ideals of money and mobility). My husband and I had sizzling jobs during the most incendiary financial era in US history. (We got rich quick). We were part of the thirty-something .com Jet Set, owning a $2+MM home in suburban Washington, DC, traveling First Class overseas and employing a household staff the size of Sri Lanka.
We were invincible, and God was superfluous.
Post-September 11 and the biggest failed Media merger in history, my family and I relocated to a small, seemingly idyllic island community to retire, have our third child and rebuild our lives in peace.
During my third pregnancy, I began experiencing irregular heart beats and went to see a cardiologist who diagnosed me with Mitral Valve Prolapse (MVP). He recommended Xanax if my symptoms became too "bothersome."
Five months into the pregnancy, the palpitations worsened. I also began experiencing chest pain and felt like I was wearing lead boots instead of Nikes. Like many people who confront the unknown for the first time in their life, I sought a second and third opinion.
My new cardiologist listened to my heart with a stethoscope while I leaned forward – something my first cardiologist didn’t do. He also said my condition wasn’t MVP, benign or simply due to the pregnancy. He requested an echo-cardiogram next day which revealed Aortic Sclerosis which is premature for my age.
Soon after wards, I noticed a new varicose vein on my leg connected to a big purple mass on my knee. I called my OB and described what I had found. He told me to take two Motrin and see him on Monday.
After examining my knee the next day, my OB said, “You didn’t tell me there was vein involvement!” He ordered an emergency sonogram of the arteries in my leg. I was diagnosed with Superficial Venous Thrombophlebitis and warned that the blood clot could travel.
This was the same week in 2003 that a young CNN reporter died suddenly in Iraq from a pulmonary embolism.
For the remainder of the pregnancy, I kept my leg elevated, used warm compresses and wore support hose. I also drafted my first Living Will and Last Testament, educated myself about vascular disease, and learned to recognize the symptoms of pulmonary embolism, heart attack and congestive heart failure.
This world was, and is – profoundly foreign to me.
Two days before the end of my pregnancy, the chest pain suddenly worsened. I called my OB and described the sensation as a rising, constricting pressure that traveled from the middle of my chest into my neck and jaw. My OB and cardiologist reassured me that Aortic Sclerosis doesn't cause symptoms, and that the sensation was due to GERD.
My instincts said otherwise, but I tried to convince myself that everything would be A-OK.
No problem here!
Two days later, I went into labor fast – my contractions were a minute-and-a-half apart when I arrived at the ER. During early labor, my nurse (who commuted over three hours to the hospital) neglected to take my blood pressure, although I had complained of the same recurring chest pain.
A few minutes later, my anesthesiologist (wearing a bandanna like the nefarious Dr. Romano on TV’s "ER") looked at my chart and voiced surprise that I had valve disease and asked for my vitals.
“Romano,” (earning his namesake) unabashedly cursed the nurse for neglecting to take my BP, and asked how I was feeling. "I feel cold and my chest is tight," I said while the nurse read my BP: 55/35.
My savior and aggressor didn’t hold back: Romano went into full crisis mode, triggering a commotion of events in the Labor and Delivery room. My husband paced in the background, coming close to my bedside then retreating like a frightened animal.
Within seconds or minutes, the anesthesiologist administered ephedrine (adrenaline) to stimulate my heart and increase my BP. Amazingly, the chest tightness went away along with the agonizing questions I had about the nature of the chest pain: was it GERD, anxiety or cardiogenic?
Talk about learning to trust your instincts the hard way!
I received ephedrine several times during labor that night. I also fainted and was asked for my Living Will and whether or not I was an organ donor before hitting the floor. When I came to my nurse apologized saying, “Your lips had turned white.”
By the grace of God (and under the care of an alert, take-no-prisoners anesthesiologist), I delivered a seven-pound boy at 3:30am on July 23, 2003.
The morning after delivery, my OB sat down beside me and said, “What you have can kill you. It can kill you."
What? Hadn’t I just delivered a healthy child, albeit the drama? Couldn’t the chest pain or valve disease be transient, i.e., due to the pregnancy?
What is “it?"
That night, I woke from a nightmare, something I don’t recall experiencing since childhood. I also went into the hospital nursery and held my tiny son, trying to understand the meaning of my OB’s words, and savoring the joy of my newborn.
A week later my cardiologist ordered a stress test which revealed a dilated Left Ventricle. The symptoms I had been complaining about – weakness, breathlessness, palpitations and chest pain – were not only due to the normal changes of pregnancy. I knew something had gone wrong. The echo-cardiogram proved it.
Validation.
A few months later, my first cardiologist – the man who misdiagnosed me and recommended Xanax – showed up inebriated in the ER when summoned to treat an elderly man with severe heart failure. To make a long story short, he’s no longer practicing medicine.
Today I’m under monitoring for progression of Aortic Sclerosis, and feeling better. But I live with chronic chest pain, and was recently diagnosed with endothelial dysfunction, a possible variant of atherosclerosis which puts me at risk for heart attack and stroke. (My coronary arteries don’t dilate normally under stress; they constrict).
I’ve had a cardiac catherization, take an ACE-inhibitor, statin and BP medication daily, and nitroglycerine as needed.
I’m also routinely quizzed about the symptoms of heart failure: "Have you woken up at night gasping for breath?” or “Do your feet swell?” and "Do you still exercise?"
Wake me up. These questions seem surreal.
Is my worsening condition due to neglect or misdiagnosis while I was pregnant? Could my care have been more aggressively managed? Why didn’t my doctor(s) take me seriously or treat me with medication? Why didn't I have more self-confidence about what I was feeling?
And why is my son only Fifth Percentile for growth and weight?
These are the questions I live with. I hope my story serves as a siren to others, especially women. We know ourselves: Speak up. Trust your instincts. Be assertive!
I'm now under the specialized care of the principle investigator of the Women's Ischemia Syndrome Evaluation (WISE) study, sponsored by the NHLB and I’m profoundly different today than I was two years ago.
I look at my children more tenderly, taking snapshots of their faces and every opportunity to teach them courage, integrity and compassion. I also love my husband more deeply. He stood up to the plate and swung multiple home runs for the team. Most of all, he never doubted me, even though I doubted myself.
For years I’ve prayed, “Create a new heart in me and grant me peace.” God answered my prayers … but not in the way I had expected. I am in awe of His grace and mercy!
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