While waiting for new hearts, women build loving friendship

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CHICAGO — For months, Niki Glass waited anxiously in Room 976 of the cardiac intensive care unit for the call that would save her life.

A few doors down the hall at Northwestern Memorial Hospital, Karen Tompkins was in painfully similar limbo. Also waiting for a heart transplant, she filled her days walking laps around the hospital floor, flipping through TV channels and worrying about how her family was managing in her absence.

Then, in early December, Glass, 37, and Tompkins, 52, were introduced by nurses who had a hunch that they'd get along well.

Almost instantly, the women formed a friendship that helped them through hundreds of needle pokes, holidays away from their children and countless nights of insomnia as they faced what may — or may not — happen next.

On a floor mostly occupied by much older, male heart patients, the two women with faulty hearts but much love built an inseparable bond. They nicknamed themselves the "heart sisters" and impressed hospital staff with the way they could complete each other's sentences, cajole each other into doing exhausting exercises, or spend quiet time together, just sitting.

"Depression, it's always a heartbeat away because you're always thinking, 'How's my family doing without me? How will they make it without us?'" said Tompkins. "So when you find somebody that can relate to what you're going through, you hold on to them like life support."

The women's friendship was so strong that Tompkins was in tears on the bittersweet day just before Christmas, when she learned she'd been matched with a donor, while Glass would have to keep waiting.

As Tompkins' family celebrated the news in her hospital room, Tompkins walked into Room 976.

"It was so hard. I just laid my head in her lap and I fell to my knees and I said, 'I don't know how to tell you this. I love you so much. I don't want to leave you,'" Tompkins recalled.

Glass told her friend to stop crying.

"I said, 'You don't need to feel that way. You need to be on the first train smoking out of here. My turn is coming.'"

A month later, it did. By Valentine's Day, both women would have new hearts.

Since the first human heart transplant was performed in 1967, the procedure has been offered at major hospitals across the country, with about 2,000 transplants nationwide each year, and three times more men than women receiving them, according to Dr. Allen S. Anderson the medical director for Northwestern Memorial Hospital's Center for Heart Failure.

Last year, the center performed 32 of those heart transplants on patients chosen after a team of doctors, nurses, social workers, psychologists and other specialists decided that nothing short of a new heart could save their lives.

But hearts aren't given to people just because they need them. Transplant candidates also must demonstrate a strong support network, a willingness to comply with many follow-up appointments and medicines after surgery, and an emotional stability to handle a profound reality that can sometimes be overwhelming: Someone had to die in order for them to live.

"It's a limited resource," said Anderson. "We want to make sure that the patients that you offer transplants to have at least an average chance of doing well."

Once in line for a new heart, some patients can stay at home with their own failing hearts. Others have surgery to install a mechanical pump, known as a ventricular assisting device, or VAD. The device may keep a patient strong enough to return to her every day life, according to Andrew J. Sauer, assistant professor of medicine at Northwestern University Feinberg School of Medicine.

Still others, like Glass and Tompkins, require continuous infusions of medicine to keep their hearts and vital organs stable. Those patients are assigned to their own rooms on the ninth floor of the Center for Heart Failure, surrounded by patients recovering from heart attacks and other serious heart procedures.

A year ago, Glass had never had any major medical issues as she juggled the demands of her career as a part-time event planner with raising seven children.

But on the night of Jan. 28, 2014, she felt pain in her chest while lying in bed next to her husband. Assuming it was gas, she tossed and turned in bed and then, as the pain became acute, she called out to her husband, she recalled.

Four days later, she woke up at West Suburban Hospital in Oak Park surrounded by family. Doctors told her she had suffered a heart attack with a coronary artery dissection that had required triple bypass surgery.

She was 36 years old.

Cardiac surgeons had hoped that with a combination of their repair work and her youth, Glass' heart would mend on its own.

But nearly seven months after the emergency heart surgery, Glass felt short of breath while sending her children off to school. She crawled upstairs to her bedroom for a cellphone to call a friend and ask for a ride to Northwestern Memorial, where she had been treated.

It didn't take long for the medical team to determine Glass' heart was not improving. Her only chance of survival would be a heart transplant. She was admitted immediately.

"You always would rather treat the person's own heart rather than having to resort to something like a transplant, but in her case it just wasn't feasible," Anderson said.

And then the waiting began.

She was in the hospital for Thanksgiving, when her extended family came for a turkey feast she planned in a hospital conference room, complete with plastic china dishes, fake crystal glasses and other fancy touches she ordered online.

Glass was in the hospital for all of December, when she shopped online for the children's Christmas presents and wrapped them from her hospital bed.

While the children were in the care of relatives, her husband, Bill, slept on a pull-out sofa in her hospital room. Glass spoke with her kids every day by phone or through Facetime, and they visited every Sunday. But it pained her that she wasn't home to hug her 10-year-old daughter, Nakia, when she cried over the phone about feeling lost at her new school. She hated not seeing off her 16-year-old son, Marquis, as he went to his first homecoming dance and tried out for the basketball team.

"I have to save face on the phone and be strong, but just not being able to be there and be a mom, I think, is the hardest part," Glass said.

Tompkins, a mother of four and grandmother to another four, knew congestive heart failure ran in her family. Her mother died in 2010 after nearly 15 years of treatment related to heart disease.

But through the age of 50, Tompkins had never seen evidence of her own heart problems. She worked full time, test driving cars at Ford Assembly Plant in Chicago, then walked several miles each day at a local forest preserve for exercise. She watched what she ate and never tested high for cholesterol or blood pressure, she said.

Then last year, she had such a terrible time catching her breath after walking up a broken escalator at work that she went to the emergency room. After several tests, doctors diagnosed heart failure and began treating her condition with a variety of medications and a portable defibrillator.

Tompkins was back at the hospital for more tests on Nov. 20 when doctors insisted that she be admitted. They told her that her heart was operating at about 12 percent of its capacity. She would need close monitoring — and eventually, a transplant.

The news came as a shock to Tompkins, who hadn't packed so much as a tooth brush.

"It was absolutely unbelievable," Tompkins said. "I just did not know I was that sick."

Like Glass, Tompkins was devastated about being confined to the hospital. Although her wait was several weeks, not months like her friend's, it was long enough to miss major milestones in her own family. Tompkins ate her family's Thanksgiving leftovers in the hospital. She watched the birth of her fourth grandchild through Facetime.

"The first two weeks, I was kind of in a fog, and I couldn't really process what was going on," Tompkins said. "I have such a big family, it took me a long time to wrap my head around how (our) life was going to function without me."

Just because a heart becomes available doesn't mean it will go to a patient in need. Other key factors, from blood type, to heart size, to antibody resistance, factor in to making a match, medical officials said.

Because of this, the wait for a heart can be emotionally agonizing, said Dr. Paul W. Goetz, an assistant professor of psychiatry at Feinberg School of Medicine.

"It's not uncommon for depression and anxiety to develop," Goetz said.

Knowing this, nurses, bound by privacy laws, for weeks mentioned the "other woman down the hall" to both Glass and Tompkins.

They finally met in the hospital elevator.

In the short ride, and on a walk on the hospital floor afterward, Tompkins and Glass marveled at how they'd both dabbled in event planning, had kids at home and missed simple luxuries like potato chips and hugging their children.

"We hit it off right off the bat," said Tompkins. "We bonded so quickly, I felt like she was a part of my family."

They formed rituals, such as wheeling their medicine IV drips downstairs to Walgreen for frozen yogurt; window shopping from their faraway views of Michigan Avenue; and signing frequent text messages to one another with their own special signature: Heart2Heart.

Tompkins and Glass coached each other through days of swallowing dozens of pills, nights lying awake worrying about mounting medical bills and painful procedures in between.

So when Tompkins got the call from her doctor on Dec. 16 saying they'd identified a potential match, it was almost too much for her weary heart to absorb, she said.

Glass, who at five months in the hospital, had endured the second-longest wait in the center's history, calmed her friend by repeating a lesson they'd both been learning along the way.

"I said, 'My heart is not your heart. We are two different people and we have two totally different makeups,'" Glass recalled. "The heart that would be for you would never be the heart for me."

Tompkins' transplant was successful, and she was discharged from the hospital on Dec. 31, and returned two times a week for follow-up appointments and procedures. Each time, she stopped by Room 976, where the two friends slurped yogurt, shared photos of their family or watched their favorite show, "Empire," on TV.

On Jan. 20, Tompkins was re-admitted to the cardiac intensive care unit due to complications from her transplant. She was frustrated by the setback, which required additional surgery.

But being at the hospital allowed her to be on hand a few days later, when Anderson, the cardiologist, came with exciting news for Glass.

He found her napping on a chair next to Tompkins' bed.

"The way he ran in, it was like, he was on his tippy toes. He said, 'Niki, Niki, I need to speak to you in your room right away,'" Tompkins said. "In my brain, I said, that sounds like a heart call."

Minutes later, Glass sent a text message to Tompkins confirming the news: she finally had a match.

Glass laughed while recalling the sound of her friend making her way down the hallway to celebrate.

"She was screaming, 'Somebody help me! Somebody help get this stuff off of me!' Then she runs down the hall, her robe is not closed and she dives on me in the bed," Glass said. "Then we were bawling together. She's like, 'I was supposed to be here for this moment.'"

Within hours, Glass underwent a heart transplant, which doctors deemed a success. After the surgery, she moved out of Room 976 to a recovery floor, where she's regaining her strength by practicing walking, exercising and climbing stairs again, Glass said.

Tompkins, who has been discharged from the hospital, returns regularly to hold Glass' hand.

Some things, the friends have learned, are just meant to be.

"It's like we had a heart connection before we had a heart connection," Tompkins said.

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©2015 Chicago Tribune

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