Jeanette McDonald has a lot on her plate, but you won’t hear her complain. Not only is she a U-M cardiomyopathy patient who has had an implantable cardioverter defibrillator (ICD) for the last three years — she’s also the mother of two boys who have ICDs.
An ICD provides immediate therapy for a life-threatening arrhythmia where the heart is beating too quickly by providing a jolt of electricity — a treatment called defibrillation. An ICD continuously monitors heart rhythms and is programmed to deliver pacing impulses to restore the heart’s natural rhythm, which can, in some cases, help avoid the need for a shock.
After her own diagnosis, U-M cardiologists recommended Jeanette’s sons be tested for the heart condition. Both tested positive and received ICDs within months of each other: Ian at the age of 20 and Jacob at the age of 18. Today, three years later, neither son has symptoms of cardiomyopathy — something they are all grateful for.
Always on her mind
But for Jeanette, the fact that her boys are living with an ICD is always on her mind. “When we first found out that they tested positive, it was very sad,” she remembers. “Having an ICD takes away a bit of the carefree aspect of life. There’s the thought in the back of your mind: ‘Is it (the shock) going to happen today?’” And Jeanette knows from experience that it takes a lot of mental work to keep a positive outlook each day.
Although both boys are now adults and in college, Jeanette is still involved in managing their care. She realizes it’s not the same as having a chronically ill child who requires constant care, and she’s quick to point that out. “We’ve been fortunate in that respect,” Jeanette says, noting that her caregiving now revolves around making sure the boys are compliant with device checks and doctor appointments.
“The sadness is that they will have to deal with this health issue for the rest of their lives.” And that, she says, adds a whole new level of stress and fear to their lives.
Not holding back
Jeanette’s trip last September to Yellowstone National Park marked the first time she strayed far from medical help — a milestone that made her realize she needs to live her life. I was holding back, but I don’t’ want my sons to hold back with their lives.” She remembers what their cardiologist, Dr. Eric Good, said after her boys’ ICD surgeries: “I want them to be able to live their lives.”
This dedicated mother says she thinks about those words every day.
Take the next steps:
- Join us March 18 at 1 p.m. for a live web chat about ICDs from the arrhythmia experts at the University of Michigan C.S. Mott Children’s Hospital Congenital Heart Center.
- Read frequently asked questions about living with an ICD.
- Learn more about our adult congenital heart center.
The University of Michigan Samuel and Jean Frankel Cardiovascular Center is a top-ranked heart and heart surgery program among Michigan hospitals. To learn more, visit our website at umcvc.org.