ANTIGO — Lucy Cuellar felt her legs giving out.
She sat down on the side of the road with her 8-year-old son, Isaac, leaning slowly to the side and pressing her cheek to the ground.
As her husband, Trini, ran down the street to the family’s home, Isaac curled up behind his mother on the ground.
One car, then another passed down the street without stopping.
“Why aren’t they stopping?” Isaac asked Lucy, pressing his chest to her back and wrapping his arms around her.
It seemed like minutes before on that Saturday afternoon in March 2005 that Lucy had woken from a nap with a start. She couldn’t breathe and told Trini that she needed a walk for fresh air.
Two weeks before, the hair stylist’s neck had become so stiff she couldn’t lift her arms at work. Ibuprofen didn’t help and she had trouble sleeping.
And four days earlier, Lucy felt a burning in her chest as she reached into her microwave to grab a coffee cup, like swallowing a baked potato whole.
But the pain and her concern faded after she laid down. Her doctor made her promise to go to the hospital if the pain returned.
None of the symptoms registered with Lucy as indicators that something was wrong with her heart.
Her arms didn’t tingle. The pain in her chest faded.
Waiting for a donor
On that Saturday morning in March 2005, Lucy arrived at Langlade Memorial Hospital, the pressure and pain in her chest gone. Doctors at the emergency room guessed she had an anxiety attack and sent her home.
Lucy would return to the hospital two more times. After passing out during her third visit, she was transferred to Aspirus Wausau Hospital.
Doctors found a major blockage in her left descending coronary artery. As they placed a wire metal mesh tube, called a stent, into the artery, it collapsed.
Two-thirds of Lucy’s heart was destroyed in the heart attack that followed. Doctors placed two more stents into arteries, saving her life. They also determined that the burning she felt in her chest days before was another heart attack.
Now 54, Lucy is one of 76 people in Wisconsin, among 3,185 people in the nation waiting for a new heart.
She perches on the raised hearth of the fireplace of her Antigo home, a fire warming her back on a recent morning. Photos of Isaac, now 14, cover the mantle. A round portrait of the family hangs above the fireplace.
Lucy has become a cheerleader for organ donation. She emphasizes the thousands of recipients who go on living because of donors.
But the undeniable reality of what she’s waiting for isn’t something she can consider with a smile.
“I hate that I have to depend on someone else to die,” Lucy said, as tears make a rare appearance in her eyes. “I don’t really ever want to go through another surgery. I don’t ever want to have my chest cut open again.”
It’s a common emotion for those waiting for a donor, said Christine Monahan, a social worker with the University of Wisconsin’s Organ Procurement Organization. She routinely reassures recipients that they should not feel guilty but transfer that feeling into caring for the gift provided.
Donor’s surviving family members usually feel a greater attachment to the recipient of their loved one’s heart. Monahan believes it’s because they can feel a heart beating, listen to the sound with a stethoscope.
She suspects another reason for parents.
“When you have an ultrasound done during pregnancy, that beating heart is the first thing you see,” Monahan said.
‘Controller Pete’
Another statistic, one that causes Lucy to wince and the one doctors didn’t tell her until she conceded to a transplant, is as difficult to deal with as knowing someone else must die for her to have a chance.
For Lucy, there’s nothing left to do but wait. Nineteen people on average die per day waiting for a heart transplant.
She battled through two and a half years of therapy and medication after her triple bypass. When doctors told her that she should be placed on the waiting list for a heart transplant in December 2008, she balked.
But time and Isaac melted her resistance.
“At that point, I had a 12-year-old. It would hardly be fair to him to say, ‘I’m done, I don’t want to do this anymore. Sorry, kid, mom’s quitting,'” Lucy said.
For now, a ventricular assist device, dubbed “Controller Pete” by the family, keeps Lucy’s heart beating.
The 11-pound VAD is stored in a fannypack that Lucy clips around her waist as she does housework. It beeps insistently when battery power runs low, and Trini hustles to hand Lucy a newly charged pack.
A white tube, about the width of a finger, extends from the device into the side of Lucy’s abdomen, connecting to a pump that looks like a pack of cigarettes placed just below her rib cage. She can feel the outline by pressing her hands into the soft tissue just below her breastbone and feel the device shift occasionally.
The pump has increased the level of activity Lucy’s heart can sustain. This winter, she very carefully tried ice skating. On good days, she goes snowshoeing. Just thinking about taking a walk on a sunny day brings a smile to her face.
She cherishes small things: making bread pudding for a fellow rehab patient, hanging laundry on the clothesline, a modified warm bath with just a few inches of water to avoid splashing her surgical bandages.
“I’ve been in pain, and I know what a wonderful gift it is not to be in pain,” she said. “I know what a wonderful gift it is to be energetic. To want to do things and actually be able to do them.”
Waiting for someone to die is too bleak a description of Lucy’s time on the transplant list. She prefers to think of this period as waiting for someone generous enough to donate the heart that’s just right.
When that day comes, she hopes to look into the eyes of her heart donor’s friends and family, press a cold stethoscope to her chest and let them hear what the gift means to her.