A Virus Struck At 32, Sending Her Into Stage 3 Heart Failure

She was a young mother, working hard. Truth be told, Lucy Boenitz was wearing herself out. She was working the night shift as a respiratory therapist, raising her two young boys, virtually, on her own.

Boenitz wasn’t taking care of herself. She knew that. She wasn’t sleeping. She wasn’t eating right. And she was grieving. Still grieving.

Just a few years before, she had lost her baby girl Emma. At four months old in 1996, Emma had died of sudden infant death syndrome.

Boenitz had this overwhelming sense of sadness. A constant question of why? Why her baby girl?

“That just took a lot of grieving,” said Boenitz, as she sat inside her Indianapolis home this week. “When they say, ‘Grief can break your heart,’ I believe it can.”

Break her heart? Grief did break her heart. Literally.

That grief stuck with Boenitz as she worked the night shift and raised those two small sons, William and Sam. And then, because of her overdoing and weakened immune system, she became sick – a virus.

Boenitz slowed down a little. She took some antibiotics, but after three or four different prescriptions and breathing treatments at home, Boenitz wasn’t getting better. She was more exhausted.

She could barely walk from the couch to the TV, just a few feet. She was so short of breath. As a respiratory therapist, Boenitz dismissed it as pneumonia.

But then Boenitz took a turn for the worse, and she could dismiss it no longer.

***

That virus had ravaged her heart, her left ventricle. Barely 33 years old, Boenitz got the news: She was at Stage 3 heart failure. A normal left ventricle ejection fraction is 55 percent or higher. Boenitz’ was at 10 percent.

Her heart wasn’t pumping blood the way it should be. Her heart was destroyed. Doctors told her she would need a heart transplant. But she wouldn’t listen.

“I said, ‘No. I am going to hold on to this heart,’” Boenitz says. “‘Oh no. I think I’ll be OK.’”

Boenitz is sure now that her reaction was denial and fear, along with an unbelievable sense of hope.

“If I could hold onto my own heart as long as I could, there would be something,” she remembers thinking. “There would be something that would take care of me.”

But, there wouldn’t be something.

Her heart was like an overstretched rubber band. There was no bouncing back. It wasn’t going to get better on its own.

Yes. Boenitz would need a heart transplant. But it would take her quite a while to finally accept that.

***

Boenitz was put on medications and she was surviving. Things seemed pretty good, she says. Except for the heart attacks.

One happened at her son Will’s second grade school Christmas party. They were doing the Mexican hat dance. Boenitz started getting dizzy. She had to go lie down on the couch in the school lobby.

It was one of several heart attacks Boenitz suffered before doctors figured out she had a tear in one of the main arteries of her heart. They put a stent in. The heart attacks stopped.

But then other things started happening. She had episodes of irregular heart rhythms, scary episodes. She would feel her heart “galloping.” She would get lightheaded.

Doctors inserted a defibrillator in her chest. Here she was still a young mom, but a mom who had to force herself not to think about what could happen.

“I remember being afraid,” she says. “I remember more, though, that I didn’t have a choice. I still needed to raise my children. There was no choice.” 

But things were getting worse. The trial medications weren’t helping. She easily qualified for disability and stayed home.

“They couldn’t really predict what might happen with me as sick as I was,” Boenitz says. “Most people with an ejection fraction that low, they just don’t live.”

It got to the point where Boenitz had to carefully plot out her week’s agenda. She could handle one, maybe two, things a week. Other than that, she sat at home.

Yet, even as bad as things were getting, Boenitz was being stubborn. There would be no heart transplant.

***

IU Health Methodist Hospital is the place the sickest of the sick go. That is where Boenitz ended up.

Her cardiologist was Jacqueline O’Donnell, M.D., who developed the heart transplant program at IU School of Medicine.

One day, Dr. O’Donnell looked at Boenitz. “You must get a transplant.” There was no other option. Dr. O’Donnell had an intervention. She called Boenitz’ family into a conference room. They all agreed.

“It was getting worse, more hospital visits, all the time,” Boenitz says. “I knew what Fall Creek Parkway looked like from the back of an ambulance, I was going so much.”

When she needed gall bladder surgery in 2005, doctors weren’t even sure she was strong enough to survive. When she made it through, they told her again: “You are so sick now that your heart can’t compensate anymore.”

Boenitz wanted to go home for Christmas. The doctors told her mom, Glee, to take her home. “It might be her last Christmas,” they said.

Days later, she was back at the hospital. Doctors implanted a left ventricle assist device (LVAD), a mechanical pump inside her chest to help her weak heart pump blood.

She doesn’t remember a lot of that time. She was so tired. In April, they send Boenitz home with the LVAD.

She also came home on the heart transplant list.

***

The LVAD was so annoying. It whirred and pumped constantly, Boenitz says. It was so loud. It had to be plugged in at all times or run on a battery, which didn’t last long.

If the LVAD went out, Boenitz could die. She and Sam only made one trip out of the house alone with that LVAD, to get a Sno-cone.

She couldn’t take showers. She couldn’t hear her favorite sound in the world – a summer rainstorm. She was feeling depressed.

The Friday of Mother’s Day weekend, things got worse. Something was really wrong and Boenitz knew it.  She made it to the phone to try to dial 911, but her fingers weren’t cooperating. They kept hitting 624 or 552.

“I literally was watching myself and my brain was not doing what I was telling it,” Boenitz says.

She called Sam, then 8, into the room. He was in second grade.

“I was trying to stay calm, but I was terrified,” she says.

Sam called 911. He told the operator about his mom’s heart failure and her LVAD. Sam saved her life that day. Boenitz truly believes that.

Boenitz woke up that Mother’s Day Sunday, saying the Lord’s Prayer. Doctors determined there was a leak in her LVAD pump. That’s why she had been so sick.

But after more days in the hospital and more setbacks, Boenitz remembers being ready to give up.

“I was so tired. I was devastated,” she says. “I started questioning God. Why? I just don’t think I can rally from this.”

She calls it a perfect storm of medical care that got her through it all. The doctors, the nurses, the dietary team, the housekeepers the transporters at Methodist. They were so kind.

Boenitz got well enough to go home again. It was just before her 39th birthday on Aug. 7.

She got to celebrate at home, wishing for the best birthday gift she could think of – a new heart.

***

She was sitting on the edge of her bathtub shaving her legs 10 days later on Aug. 17, 2006. Her dad was there with her; someone always had to be with her.

The phone rang. A woman needed to talk to Boenitz. Her dad handed her the phone.

“We have a heart for you.”

Boenitz had not heard sweeter words. It was her transplant coordinator.

At Methodist, she remembers her family all there wishing her luck. Praying they would see her again.

“I was scared, but I couldn’t tell anybody,” she says. “Because that’s what we did. My mom was very strong. I was raised very strong. So I didn’t say anything.”

She remembers being on the table and looking over at the heart-lung bypass machine. Thoracic and cardiac surgeon Mark Turrentine, M.D., came into the room. Boenitz hadn’t cried yet. 

When she saw him, one tear rolled down her face. She told him: “If I come out of this, I do not want to stay on that ventilator long. Get me off that vent.”

The surgery went late into the night. And it went well. The vent did come out quickly.

Boenitz, after nearly seven years of battling, had a new heart.

“I remember waking up and it was so quiet. I heard nothing,” she says. “There was no pump. It was just silence.”

And she loved it. As she recovered, a summer rainstorm passed by her hospital room.

“It was glorious,” she says. “There are a lot of times when you have great moments of clarity and that was one. It was just so quiet and I was so thankful. I had never been so simplistically grateful. Just true gratitude.”

***

She always wondered why her little Emma died.  Why that period of grief that destroyed her heart happened.

Boenitz knows now.

Her heart donor’s name was Matthew. He was in his early 20s, a volunteer firefighter, a good young man whose life was just getting started.

He was driving on a summer night. It was raining and he hit a slick spot. The impact was so severe.

Years after her transplant, 7 years after, Boenitz got to talk to Matthew’s mom. His name means a gift from God.

Boenitz could understand how she felt. “I lost a child, too,” Boenitz told her. She could truly feel her grief and her pain.

She felt her life came full circle.

“What losing my child allowed me to do I realized, it was my way to help her, help his mom,” she says. “To understand that this gift of Matthew’s heart was so graciously given. And it was so thankfully and gratefully received.”

More About Lucy Boenitz

Personal: She is married to husband, Tom, and has two grown sons, Will, 25, and Sam, 20. She is a stepmother and has two grandchildren.  

Career: Boenitz is a first grade assistant teacher at St. Richard’s in Indianapolis. During the summer, she works the dolphin pavilion at the Indianapolis Zoo.

Animal love: Her two dogs are her babies. Maggie is an 8-month old English yellow lab and Yara is a 13-year-old Australian cattle dog

-- By Dana Benbow, Senior Journalist at IU Health.

   Reach Benbow via email dbenbow@iuhealth.org or on Twitter @danabenbow.


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