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Chrissy’s Story: Living life with a big heart

Like many social workers, Chrissy Shaver, a MedicAlert member since 2018, has a big heart full of compassion for people in need. Over the years, she has given her time and energy to help victims of rape and domestic abuse in New York. She used to be Director of Social Service for a center that received as many as 900 patients every year. She is also busy with raising two teenage sons. Her goal in life is to help people and make a difference in the world.

While her heart for serving others remains strong, her physical heart cannot keep up. First diagnosed with congestive heart failure (CHF) in 2011, Chrissy is now waiting for a heart transplant.

Chrissy’s CHF is mainly due to genetics, although a 2011 pregnancy made the condition worse. Things took a devastating turn when her baby daughter died in labor. Her CHF stayed stable until 2017, when she started to feel crippling stomach pains. An endoscopy showed ulcers, but the gastroenterologist was not convinced that was the only problem.

In February 2018, Chrissy had a stroke that landed her in the hospital. A month later, she was hospitalized again for shortness of breath. Doctors found that she was in stage-four heart failure. In April, she received a left ventricular assist device (LVAD) to keep her heart functional.

An LVAD is an implanted device helps a weak heart pump blood. Part of the device is attached to the left ventricle, where the heart pumps blood into the body, and another part of the pump is attached to a controller outside the body. This means that Chrissy must carry this device with her everywhere she goes, recharging it at night.

While this sounds like an inconvenience, it has improved her quality of life. Before the implant, she was out of breath frequently and had difficulty breathing because her heart struggled to get oxygen to her body. Now, she speaks normally and has more energy.

Some people use an LVAD for the rest of their lives, but for Chrissy, it’s a “bridge to transplant” while she waits to receive a new heart. Donor hearts are already difficult to come by, and because she is 6’1”, Chrissy needs a heart from a taller person.

Her health journey affects not just her life, but the lives of her two teenage sons. They are both helpful and attentive to their mom’s medical needs, but Chrissy’s health creates a lot of anxiety in the household. One of her sons admits that sometimes he still has nightmares about his mom’s condition. Chrissy is determined not to let her medical needs take away from their childhood and teenage years.

“I try to be as independent as I can,” she says. At the same time, she says, “I don’t want any surprises.” She continues to keep her sons in the know about her condition and encourages them to talk to her doctors. Because her heart condition is related to genetics, she wants to make sure her children stay as healthy and informed as possible.

Her condition may be dangerous, and it may be a long wait until she gets a new heart, but Chrissy is still optimistic and ambitious. Living in Queens, New York, she is in her last year of studying for her Masters Degree in International Crime and Justice. She originally wanted to move to her mother’s native Trinidad and Tobago to work with childhood sexual-abuse cases. Although she is waiting for her new heart, she hasn’t given up on this goal.

“When I get my heart—and I’m hopeful, I follow my coordinator’s directions—I’m going to be all over!” she laughs.

Because Chrissy is determined to stay as independent and active as possible, it is especially important to have a safety net when she’s out and about. For her, wearing a MedicAlert bracelet is more than just a precaution. In an emergency, it could mean the difference between life and death.

"People can’t even tell I have this machine," she says about her LVAD. "Let’s say I pass out, from medication or dehydration, or let’s say the battery dies. You can’t do CPR because you could break the LVAD. These are things that people need to know."

After receiving her LVAD, Chrissy started to research how she could let people know about her particular medical needs in case she is ever unconscious. One of her cousins, a police officer, told her that first responders are trained to look for MedicAlert medical IDs.

Because of the LVAD, Chrissy does not have a natural pulse. In an emergency, it would be easy to mistakenly think she was dead. She also cannot receive an automated external defibrillator because of her LVAD.

"If they call MedicAlert, they know what to do,” Chrissy says. “And that means I can live my life without so much worry."

Watch more stories from our members here.