Driven By Hope
Written by M. Rutledge McCall on contract for Joana Baquero, this is the true story of a tough, remarkable young woman who refused to succumb to a deadly, one-in-a-million genetic malady coursing through her brain… a condition for which there is no cure.
I Want to Live!
I moved into my new apartment in Manhattan in February of 2009. I loved the feeling of newness all around me. New home, new furniture, new job, new life. I had earned my MBA at Cornell the previous year and had been recruited by one of the largest consumer product companies in the world. Things were blossoming.
By April 2009, after I got my place all set up, I went to the gym and had a workout session with a trainer. It was the first time that I’d exercised, and it felt good.
But when I got home, I began to feel dizzy, like everything was moving around me. I sat down. Everything kept moving. Then the headache started. I became terrified.
I knew exactly what was about to happen and I prayed it wouldn’t.
“You’ve been here before,” I told myself. “You know what to do.”
I couldn’t believe it was happening again. Not after all this time, not after all I’d been through. I felt a stab of conflicting anger. It was just like before. Never knowing when it would happen, not knowing what would bring it on, wishing it would stop—permanently. Because doctors had told me it would never happen again. And now, it was.
Having this shadow lurking within me, this now-apparently uncontrollable condition that could hit whenever it pleased—whether I was putting on lipstick in the morning before work, attending a meeting at the office, or leaving the gym after a workout session—had always made me constantly aware that my life was not normal. It never was and never would be “normal,” no matter how much I wanted it to be, no matter how I tried to make it look that way on the outside, and now—obviously—no matter what treatments I underwent, anywhere I lived.
After five years of apparent freedom from its clutches, I had to face it. I was different. Not to look at, but definitely different on the inside.
As I sat there angrily trying to decide what needed to be done next, I mentally kicked myself for letting my guard down after all these years.
What was I thinking!?
I knew better. I barely even remembered the first episode, way back in 1990, which is probably why I had grown complacent and started doing things I’d stopped doing long ago.
The same thing had happened in July of 2001 in Bogotá—right after a workout at the gym, too. And in April of 2002 in Los Angeles—right out of the blue. And in December of 2002 in Colombia—and again the following February.
And now this.
I wanted to curse and cry at the same time. I willed myself to stay calm. I took a breath. I let it out slowly through pursed lips. I picked up my mobile phone and dialed my doctor’s office.
“I’m not feeling well,” I told the nurse. “I feel dizzy. Sort of like… I’m not sure if it’s a—”
“Do you have a headache?”
“Yes. But something’s not right.”
“Joana, go to the ER. Now.”
I hailed a taxi in front of the building.
“To New York Presbyterian on 66th and York, please.”
Maybe it’s just a migraine, I thought—I prayed.
I was taken to the ICU, and for the first 24 hours, I was motionless and unable to eat, because doctors thought they would need to open my head. I knew from previous occurrences that once I had received an infusion of cryoprecipitate, the internal bleeding would stop. This time, however, I would be treated with infusions of a synthetic fibrinogen concentrate product called RiaSTAP.
After the first infusion, I began stabilizing. By the time the nurses prepared to administer the fourth infusion, they couldn’t find a vein, because my veins were too small and hard to get to. So the doctor decided that I should have a PICC line inserted.
As the infusion started to go in through the PICC line, my breathing became short and labored. My heart rate shot up to 188. I was going into anaphylactic shock. Monitors and alarms started blaring.
The medical team rushed to my bedside to do whatever might be necessary to stabilize me, ready to administer an epinephrine shot.
“Please don’t let me die!” I pleaded to a nurse who was holding my hand.
As tough as I had become (had to become) over the years since my first intracranial bleed in December of 1990, I had managed to put together a pretty decent life. A miraculous life, really. I was in my early 30s, I had a great job at a Fortune 200 company, a brand new apartment in the city, and had earned my MBA at an Ivy League university barely a year earlier. I had worked hard to get where I was. I was five feet two inches tall, 110 pounds on a heavy day, petite, brunette, and my brain was bleeding.
“Please!” I begged as tears began to stream down my cheeks. “I don’t want to die.”
I didn’t know how much more I could take. All I could think was, I want to live!
Wondering if these attacks would never stop, I thought back to my horrific, near-death experience just seven years earlier, in Los Angeles…
* * *
Due to my lack of insurance, no private hospital would take me, so I ended up at the L.A. County Hospital in the rundown Boyle Heights section of downtown Los Angeles. Renowned for the extensive training it offers physicians and residents in the treatment of “GSW” (police jargon for gunshot wounds), the notorious facility had a far more lengthy patient list than the national average of people admitted for GSW and for having been stabbed in gang-related or domestic violence incidents.
I was about to be treated to my first experience with the dichotomy and the class division that is healthcare in America. Those who had money were well taken care of. Everybody else had to get by with the dregs of the system.
The rough and tumble Boyle Heights neighborhood was a hotbed of gang violence and was home to thousands of the city’s homeless. When we arrived, the hallways were packed, crowded with people, visitors, outpatients, handcuffed criminals being escorted by stern-faced gun-belted sheriff deputies, L.A.P.D. officers and police from the many jurisdictions in the surrounding area. There were children in threadbare clothes with harried-looking mothers, prisoners with chains on their wrists and ankles, hard-looking people in the worst economic and emotional straits, with physical injuries, strolling seemingly aimlessly through the dingy, green-linoleum hallways of the massive ancient hospital that served the city’s poor and underprivileged and uninsured. And now, me.
If I wasn’t already frightened out of my wits by the thought that I might be on the verge of another brain bleed, I sure became scared when my eyes began to register the stark, hurting sea of humanity before me. L.A. was an eye-opener. The desperation and poverty were ruthless. But for the lack of gunfire and beheadings by rival drug lords, it was like being in the roughest parts of Bogotá, Colombia, during the depths of the drug cartel wars.
In Colombia, I had grown up protected, sealed off from much of the day-to-day challenges that the majority of the world experiences. I was frightened being at L.A. County Hospital. In spite of the mass of disheveled patients all around me, I felt all alone.
I told a neurologist, “I’m afraid that the dizziness and vision disruption I’m experiencing are being caused by a bleed in my brain. The bleed is related to a genetic disorder I have called afibrinogenemia.”
I tried to explain to the doctors what was going on with me. Gunshot wounds, they knew well. Afibrinogenemia, not a clue.
“No, no,” they said. “You’re fine. It’s probably some simple vertigo. It’s nothing. A tension headache. Don’t worry about it. We did a CT-scan and checked it out. There’s no bleeding. What’s the name of that thing again? Afibarini… what was it?”
It was déjà vu all over again. The doctors all thought they knew better than the patient.
At the time, my sister was still living in Nebraska, working on her family practice residency at University Medical Center in Omaha. I got on the phone to her immediately.
“I almost fell down from dizziness,” I told her. “I’m having those vision disruptions. I’m also seeing bright lights and dark spots. It’s like the world is darkening.”
“I’ll call the hospital, book a flight to L.A., and talk to your doctor in Colombia.”
“Pilar,” I said, trying hard not to cry, “I want to get out of here. I want to go home.”
“I’ll make sure they give you a cryoprecipitate infusion and I’ll get there as soon as possible.”
“They said I don’t have a bleed.”
“Did they do an MRI?”
“No. A CT-scan.”
“Then they’re wrong. It’s a bleed.”
“I love you.”
“I love you, too. Hang in there. I’m on my way.”
She called me when she arrived.
“Where are you?” she asked me.
“I’m in the middle of a hallway. On a gurney.”
“Because this place is so crowded, there’s no room.”
Pilar was shocked at the sight of the L.A. County Hospital. She went through the metal detectors. She was patted down along with people in handcuffs. She was asked brusquely if she was expected by anyone, as if she might just have been there to study the architecture or to have lunch.
She found me parked on a gurney in the hallway, dressed in my flimsy hospital gown under a threadbare blanket. When I saw her treading down the hallway, it was like seeing the cavalry arriving. I burst into tears, relieved at the sight of her friendly, smiling face. She had even bought me a teddy bear at the airport. I smiled as I clutched it to me.
Pilar’s experience as a resident at the University Medical Center in Nebraska had been much different than what she was seeing now. UMC was a nice, modern facility used by everybody in the Omaha area—both wealthy and poor, because the hospital turned down no one. It was the same when she had been in San Antonio at the University of Texas Medical Center, a nice facility that served everyone, during a rotation while she was still attending medical school in Colombia.
Not so with the public hospital in Boyle Heights, run by Los Angeles County. It served the destitute. Period. It was old. It was run down. The wealthy and privileged avoided being anywhere near the surrounding neighborhoods at all costs. Even the middle class preferred to travel farther to other hospitals than enter the bureaucratic maw and aura of desperation and gloom that permeated this old hospital.
Pilar explained to the neurologist that my dizziness was likely being caused by a significant bleeding episode in the cerebellum, which in turn was related to an exceedingly rare genetic disorder.
“That’s what’s causing her headache and sense of vertigo,” Pilar explained. “She’ll need a cryoprecipitate infusion immediately.”
The doctor brushed it off, saying, “The CT-scan didn’t show a bleed, doctor.”
“Doctor,” Pilar said flatly, “you’re wasting time. A CT-scan won’t work.”
“And why is that?” the doctor asked.
“Because in people with a fibrinogen deficit, such as Joana has, this bleeding doesn’t always show on CT-scans. But they always show on MRIs.”
He responded by listing his credentials and explaining that he was an expert and had been trained at the University of Chicago.
She explained to him that she was my sister, had known me her entire life, and had observed and studied mine and Alejandro’s condition for over two decades.
He countered that he was pretty confident in the results of CT-scan. “It revealed everything we need to know,” he said. “She probably experienced a bout of vertigo. In fact, I’ll bet you lunch that your sister doesn’t have anything but stress. She’ll be fine.”
Pilar had expected this routine, of course, and she pulled out the medical journal articles she had brought with her and said, “Doctor, look at these. The bleeding won’t always show on CT-scans.”
The doctor wasn’t interested in being taught by a resident. It was a wall Pilar had butted up against again and again in her brief medical career in the U.S. She had come to experience that because the profession was so dominated by men, being told by a female what the proper medical procedure would be wasn’t something they were always willing to listen to. The fact that my sister was only in her 20s, Hispanic, and still in her residency seemed to only add to their impatience with her as she spoke to the doctor.
Pilar told the neurologist firmly, “Doctor, you need to do an MRI. Now. Call her doctor in Bogotá to verify what I’ve said.”
She gave him the phone number and the L.A. hospital team and Pilar got on the phone with my doctor in Colombia. He confirmed that I needed a cryoprecipitate infusion to deal with the bleed and asked why they hadn’t done it yet.
“We found no bleed,” came the L.A. doctor’s reply.
“The MRI will show the bleed,” Pilar stated again calmly.
The hematologist did the MRI. It was conclusive. I’d suffered a major intracranial bleed in the occipital lobe in both sides of my cerebellum.
I was given a cryoprecipitate infusion immediately.
Pilar looked at me and chuckled, “They see a woman with scrubs, they call her a nurse. They see a man with scrubs, even if he’s an orderly they call him Doctor.”
I smiled. “Thank you, Pilar,” feeling relieved that I would be allowed to go home the next day.
After Pilar left, I settled in for a night in the huge old hospital, which could have doubled for an asylum in a Bela Lugosi movie from the 1940s.
I had been used to Colombian hospitals, where patients had their own private room. But at L.A. County Hospital, I shared a room with five other ladies, who were also in dire straits.
I cried my eyes out that night being away from my family and thousands of miles from home, scared to death, huddled on a thin mattress in a big old frightening hospital packed with society’s hurting castoffs. I never felt so miserable. I prayed like never before.
I wasn’t the only one in that room who was frightened and in pain. One woman, who was lying in the bed in front of me, had bone cancer. She was a single mom, in her mid-thirties, and had three kids. From her condition, and being in that hospital, you could tell that she didn’t have the financial means to be anywhere better. Her face reflected pain and anguish, she was helpless.
She told me, “I just want to leave the hospital to be with my kids.”
It broke my heart. I had been crying because I was in that awful hospital. But I had nothing to complain about compared to her.
All she wanted to do was go home and be with her kids. She put into perspective what really mattered in life. Through my tears I promised her I’d never forget her.
That harrowing night I gained a special appreciation for life, hearing the crying, seeing the tears, almost feeling the very anguish and pain of women like her. It humbled me. It frightened me. It sobered me to the realities of the goodness of God… and puzzled me about the pain His children had to endure in this world.
I had always had my family with me. Whenever I was facing challenges, important decisions, pain, heartache, I never went through it alone. My family had always been with me through the journey. The five of us always took family time to talk things through together, come to a decision and put it into action. That closeness gave me strength in times of crisis. It was one of the things that gave me comfort and resolve in dealing with my medical issues. Our family backbone, our resoluteness in standing together, our resiliency despite all of my health challenges, had created my sense of unity with my family. Along with the hand of God, this bond was what usually got me through any travail.
But this night was different. This night I felt so alone and helpless. As a devout Catholic, I believed strongly in God. But this was a tough one. I felt so lonely in that gloomy hospital. I missed my family terribly.
This ordeal is finally over, I whispered to myself over and over as sleep began to claim my weary body. Soon, I would be able to go home.
…Little did I know it was about to get worse.