Member Profiles

CAROLINA

Main Entry: val·i·date
Pronunciation: 'va-l&-"dAt
Function: transitive verb
Inflected Form(s): -dat·ed; -dat·ing
Date: 1648
1 a : to make legally valid b : to grant official sanction to by marking c : to confirm the validity of (an election); also : to declare (a person) elected
2 : to support or corroborate on a sound or authoritative basis <experiments designed to validate the hypothesis> synonym see CONFIRM


My name is Carolina 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 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 has memorized 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 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 .com jobs during the most incendiary financial era in US history. We were part of the thirty-something Jet Set, owning a $2+MM home in suburban Washington, DC, traveling First Class to Hong Kong and employing a household staff the size of Sri Lanka.

We were invincible, and God was superfluous in our lives.

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 for the first time in my life and went to see a cardiologist who diagnosed me with Mitral Valve Prolapse (MVP). He recommended Xanax if my symptoms became too bothersome. That was that.

Five months into the pregnancy, the palpitations worsened, I began experiencing chest pain. I felt like I was wearing lead boots instead of my Nikes. My cardiologist didn't return my phone calls. His nurse said it was anxiety.

Like many people who confront their mortality for the first time in their life, I sought a second opinion.

My new cardiologist listened to my heart with a stethoscope while I leaned forward – something that my first cardiologist didn’t do. He also said my condition wasn’t MVP, benign or simply due to the pregnancy. He requested an echocardiogram next day which revealed Aortic Sclerosis which is premature for my age.

Soon afterwards, I noticed a new varicose connected to a big purple mass on my knee. I called my OB-GYN and described EXACTLY what I had found, and he told me to to breathe deeply, take two Motrin and see him in the morning.

The next day after examining my knee, my OB said, “You didn’t tell me there was vein involvement!”

I should've called BS on him.

My OB 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 reassured me that Aortic Sclerosis didn't cause symptoms, and that the sensation was due to GERD or anxiety.

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 OB and the island "rent-a-nurse" neglected to take my blood pressure, although I had complained of the same recurring chest pain. A few minutes later, my anesthesiologist (who wore a bandana like the nefarious Dr. Romano on TV’s ER) looked at my chart and voiced surprise that I had AS and asked for my vitals.

“Romano,” (earning his namesake) unabashedly cursed the nurse for neglecting to take my BP, then asked how I was feeling. I said my chest felt tight while the nurse took 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 helpless 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 my chest pain: was it 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 my bed and said, “What you have can kill you. It can kill you. I recommend going on Zoloft to help you cope.”

Zoloft? 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 did he mean “it” can kill you? Depression? Anxiety? Heart disease?

That night, I woke up from a nightmare, something I don’t recall ever 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 trying to savor 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 and the echocardiogram proved it.

Validation.

I called my OB with the news. Weeks later, the hospital board met to review my case and the OB-GYN was reprimanded.

Validation.

A few months later, my first cardiologist – the charlatan who misdiagnosed me and recommended Xanax – showed up drunk 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.

V-A-L-I-D-A-T-I-O-N!

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 which puts me at risk for heart attack and stroke. (My coronary arteries don’t dilate normally under stress; they constrict). I’ve had two cardiac catherizations, 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?"

These questions still seem surreal. I no longer feel invincible, and I am on my knees.

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? 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. Demand the care you deserve. Be assertive!

I'm now under the highly competent care of the principle investigator of the WISE study, (Women's Ischemia Syndrome Evaluation), sponsored by the NHLB. 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, and 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 expected. I am in awe of His grace and mercy!


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