Disease travels alone in nature. It has no friends. It does not hurry, but doesn't waste time. All it does is look for you. With dead eyes.
It found Carolyn Kinnare.
The midafternoon of Friday, May 25, 2007, is flowing along languidly, as it is supposed to in the Kinnares' Encinitas home. A pleasant weekend ahead is a given. The three young daughters are doing homework, or pretending to. Chris, 46, is fussing in his home financial consulting office. Carolyn, 45, is elsewhere in the house.
Carolyn is an engaged mother and community participant, active in PTA, Girl Scouts, church work and girls' soccer. She also carries in her body an autoimmune condition called "mixed connective tissue disease," similar to lupus. It's a condition that feels free to invite other diseases into her body.
She has said she doesn't feel well today, but shrugs it off. Probably a touch of the flu.
Chris looks up from his financial reports as 7-year-old Kyle walks into the room to tell him mommy is sick on her bed. She's shaking all over.
Chris rushes in to find Carolyn shivering and shaking, doubled over with abdominal pain. He can see the whites of her eyes as they roll upward. She is barely conscious.
Bypassing 911, Chris gathers her in his arms, puts her in the backseat and rushes to the Scripps Encinitas medical complex a couple of miles distant. Traffic lights and laws are no deterrent.
In his near-panic, he first goes to the office of his primary-care doctor. Mistake. They are not prepared to deal with the woman before them in an extreme state. They send him to the emergency room in a different building a couple of hundred yards away.
He swoops up Carolyn in his arms and rushes down the elevator and across the parking lot.
Carolyn's older sister, Kathlyn Ignacio, M.D., is a San Diego internist of two decades. She learns that her sister is in the ER and arrives after seeing her last patient.
Chris also phones Carolyn's mother, Evelyn Ignacio, M.D., a retired anesthesiologist living in Torrance. Chris tells her: "Pack a bag and get down here. Something very serious is going on."
A patient in Carolyn's dire strait does not hit the ER every day. Kathlyn says that when she arrived, a young ER doctor was coming in to write a prescription and discharge Carolyn.
Kathlyn says, "I was like, ‘Well, wait a minute. Wait a minute. Can you show me the labs?' Carolyn had an elevated white (blood cell) count. That's an indication something acute was going on. I said, ‘Well, what are you treating?' Kind of challenging him a little bit.
"If I hadn't walked through the door, she would've gone home. There was just no way I was going to let her go home when she was that sick and it was unexplained.
"They did a CT scan to rule out appendicitis, and it was negative. The doctor then walks in the room again and starts pulling out his pad to write another prescription. At the same time, the nurse is checking her vital signs, and her blood pressure's dropping. Now they've got her IVs wide open and her feet elevated to get her blood pressure up.
"I looked at the doctor. I said, a little edgy, ‘Do you think you could admit her now?' She's like crashing before our very eyes. They admitted her to the ICU, which is where she belonged."
Scripps doctors then quickly recognized the crisis and put Carolyn in a medically induced coma with a breathing tube as specialists swooped to her bedside to work on the puzzle.
Doctors saw the signs of septic shock, which basically meant her organs were shutting down and in the process of dying.
Chris says specialists worked on Carolyn all that night to find out what had crashed her system. The cause they discovered was a staph aureus (staph-A) infection.
(Staph-A has tried to penetrate you and me a thousand times today, but our immune systems don't let it get close. Carolyn's was not so diligent, probably because of her autoimmune disease.)
Doctors convened a family meeting and presented terrifying news. Chris recalls, "They said, ‘The odds of your wife surviving are slim.' I said, ‘Slim, as in how slim?' They said, ‘A couple percent. The next couple of weeks are going to be the telltale thing.'
"They said, the only thing they could do is flood the body with antibiotics. That's the only thing. (The drugs) go in and start chasing this stuff (staph) to kill it off. The question is, can you kill it before it kills you? They described the antibiotics as Pac Man running through the blood stream gobbling up staph.
"Doctors described the staph as like a swarm of bees buzzing through the bloodstream. And like bees, the staph will localize and swarm. They huddle like bees might underneath a mailbox. Staph does the same thing, mainly in three different areas: on the liver, on the kidneys and on the heart.
"They told us: ‘We're hoping that it huddles on the heart, because we can at least have a fighting chance there. If it hits the liver, game over. If it hits the kidney, depends, we can take a kidney out. All we can do is sit and hope that it goes to the heart.'
(Well, be careful what you wish for. It was soon discovered that she was in the grip of endocarditis, an infection of the heart's aorta valve.)
"They just laid it out and they said, ‘Her condition is not favorable, so you need to start preparing yourselves for that.'"
Carolyn's three preteen daughters were brought in to see their mother, and without realizing it, perhaps to say goodbye.
Meanwhile, Chris was left with the phrase "2 percent" ringing in his brain. He understood math.
Chris spent hours wandering the grounds and parking lots of Scripps Encinitas Hospital with cellphone in hand. Being from a close Chicago Irish Catholic family was a great emotional crutch to hold him upright. Two brothers, especially, talked for hours on the phone to boost his spirits.
"I just tried to focus on the now, what was right in front of me, and just try to do the next best thing for Carolyn, for our daughters and for myself. Just one hour at a time."
But when you have a strong marriage and three vibrant daughters, well, when your life is in the clouds, the prospect of falling is all the more frightful.
Chris' local priest, the Rev. Brian Corcoran, spent hours with him. "As he told me, death and disease are normal. God does not direct them to you, nor does he interfere with them. He is there to help you through them, so you need to put in that context and get into a good place and start to focus on the positives and health and healing."
Chris' younger brother took leave of his job and moved in to take care of the girls. Kathlyn and Evelyn talked often with the children to help them understand what was happening. The truth was not hidden, but was explained gently.
Another nasty surprise awaited doctors when they first removed Carolyn's breathing tube. As they lifted her out of the coma, a nurse noticed that the right side of her body could move, but not the left.
Carolyn had suffered a massive stroke while she was in the coma. Doctors immediately put her under again.
When Kathlyn entered the ICU, a doctor approached her with CT results in hand. He showed her the scans, and they were very bad. They showed major swelling of the brain.
There was more.
Kathlyn says, "On top of the stroke, she also had a heart valve that needed to be replaced because the staph had localized on the aortic valve and shredded it. When that happens, the patient goes on a bypass machine, which means you have to be anticoagulated (given blood thinners).
"However, after a massive stroke like that, you have about a two-week window where you should not be anticoagulated or you risk bleeding into the brain. Interestingly, the cardiothoracic surgeons that came to see her, they came to consult on her once because, of course, the only treatment for endocarditis of the aortic valve is valve replacement. Well, those surgeons never came back once they found out she had had a stroke."
In other words, Kathlyn, they saw no point in coming back.
"I don't know. We never got an explanation."
Enter Roy Avalos, M.D., Carolyn's Scripps cardiologist. He cut through medical red tape and contacted Dr. Fardad Esmailian, a renowned cardiothoracic surgeon at UCLA Medical Center with whom Avalos had worked before. Esmailian agreed to undertake the prayerfully perilous operation.
A helicopter was reserved to fly Carolyn to Los Angeles, but weather precluded the flight. Carolyn, instead, was sent by ambulance. Chris says that he drove his mother-in-law's Prius from Encinitas to UCLA Medical Center in an hour and nine minutes in the predawn hours.
Now, we get to the happy ending. The surgeon that Avalos so trusted delivered. Esmailian and his team saved Carolyn's life.
Recapping the experience, Kathlyn says, "It's a miracle her heart kept beating. Statistically speaking, she shouldn't have survived."
That Carolyn did survive was due to Kathlyn's forceful intervention, Chris believes. "Carolyn would not be here today except for her sister. Absolutely not."
Over the weeks of her ordeal, Carolyn was twice given last rites by a Catholic priest.
While the long life-death tension was playing out, Carolyn lay in her coma, appearing to be in peaceful repose. Au contraire. Deep inside, storms were lashing her mind like a bending palm.
Nine years later, she has no problem calling up the vivid nightmares. "I had a lot of bad dreams: People trying to kill my kids, nurses trying to kill me. I was buried alive with a dead child. A voice told me you decompose faster when you're buried that way.
"I dreamt I gave birth to twins, but the problem was, I was already dead.
"George Clooney was pretending to be one of my doctors and giving advice to other doctors. I was trying to tell people that he's not my doctor, he's George Clooney."
Weeks of rehab followed surgery, and Carolyn lost the raspiness in her voice caused by the lengthy intubation. She regained her equilibrium, both physical and psychological. Her only residual effect is a slight slowing of her memory and reasoning process. It has caused her to return to the workforce in a less demanding job. But, hey, big deal!
Scripps sent Chris a printout of the bill that was 4 feet high. However, a spokeswoman followed by with an explanation. As he remembers it, the conversation went this way: "You're in the club. That's when your bill exceeds $500,000. And I'll tell you how the game is played. No matter what kind of insurance you have, the company's not going to pay the whole thing. It's going to be a battle that could end up in court."
At that point, the bill was $512,000, not counting UCLA. More worrisome, however, was the drug bill of $200,000-plus. He was responsible for 20 percent of that.
The bill from UCLA was about $380,000. However, Carolyn received a letter from UCLA that said because Carolyn, plus her brother and sister were alumni of the school, the uninsured remainder of the bill would be written off, entirely.
Carolyn's volunteer activism returned a rich dividend. Community groups pitched in to raise more than $40,000 for the family. The hopes and wishes of more than her family were with her in that dark room.
Today, Carolyn is where many doctors back then thought she would never be - in her home. Love and science won this one. Nine years on, the Kinnare family is intact and as strong as ever.
Fred Dickey's home page is freddickey.net. He believes every life is an adventure and welcomes ideas at [email protected]