It wasn’t until Jaime Nay’s daughter was born in 2010 that her health problems began.
She had a beautiful daughter, Kailey, and celebrated her birth. However, for Nay, her pregnancy triggered symptoms of cardiomyopathy, a disease of the heart muscle, which can be hereditary as in her case or acquired. The condition makes it hard for the heart to deliver blood to the body and can lead to heart failure.
Two years after her daughter’s birth, Nay’s symptoms worsened.
“My whole body felt extremely weak. I was tired and I could tell that my heart didn’t feel normal, it felt as if it were flipping and fluttering a lot,” Nay, 38, said.
Diagnosing her Symptoms
After an echocardiogram and a visit with her primary care doctor, the West Springfield woman learned the unfortunate news.
“My primary said to me, ‘Are you sitting down? I’m sorry to tell you that your heart is functioning at only 20 percent,’” she said.
As a result, Nay was given medicine to address her symptoms, which for heart failure often includes breathlessness, swollen legs and feet, and a bloated belly.
She remained stable for a while until a few years later when a medication she was taking made her heart condition worse.
Long-term treatment for heart failure
Nay was referred to Baystate Medical Center’s Heart Failure Program, where after further treatment, the care team discussed the possibility of an LVAD (left ventricular assist device).
An LVAD is a mechanical pump that is surgically implanted inside a patient’s chest to help their heart do its job.
How does LVAD work?
The device is placed in the heart’s left ventricle and pumps blood from the weakened left side of the heart to the rest of your body. When the pump is implanted, it is connected to a controller outside of the body.
An LVAD needs to be connected to a power source at all times, whether being connected to an outlet while stationary or using a battery pack when mobile.
LVADs are used for what is termed as “destination therapy” – used as long-term treatment for heart failure. Or, as in Nay’s case as a “bridge-to-transplant therapy,” during which patients are placed temporarily on the LVAD until a heart for transplant becomes available.
Surgery wasn’t an easy choice
“When doctors told me about the LVAD, I was totally against it. I was willing to let myself die and live out my life the way I was….without the hassle of surgery and putting my family through all that stress,” Nay said.
“It was my family who finally convinced me to have the surgery. I got really sick a couple of times and was hospitalized. Finally my doctors told me that I would be dead in a couple months without the LVAD,” she added, noting that in addition to Kailey she has a significant other, Jonathan, and a son, Christopher.
And, she listened to them, eventually consenting to the surgery which was performed at Baystate Medical Center by Dr. David Deaton.
Family History of Heart Disease
“One of the things I told Jaime was that it wasn’t just about herself…..but about her family and to think about what she would be doing to them if she wasn’t here for them,” said Jaime’s sister Christie Muscaro-Asselin, 47, of West Springfield.
Nay has a history of cardiomyopathy in her family. Her sister and mom both have the disease as well. But she never thought that her sister would soon be facing the very same decision.
“Jaime and her sister have a familial mutation in the TTN gene which put them at risk of heart failure,” said Dr. Mara Slawsky, medical director of the Heart Failure Program at Baystate. She noted the mutation weakens the heart muscle so that it can’t pump blood properly around the body.
“Heart failure is a common disease in the Western world which is sometimes familial and other times the result of other factors such as a heart attack or coronary artery disease. Only in the past several years have we become more aware that there is a significant genetic component to the disease,” she added.
Dr. Slawsky noted that both women were placed on milrinone, an intravenous drug that is a short-term treatment for life-threatening heart failure. It works by relaxing the muscles in the blood vessels to help them dilate, which lowers blood pressure and allows blood to flow more easily through your veins and arteries.
“Milrinone gave my sister almost another year before needing the LVAD, however, it didn’t work as well for me and within two months I was scheduled for the surgery,” Muscaro-Asselin said, who is married with two children, Matthew and Ann-Marie, and who also provides a home for her son’s friend, Tim.
For the sisters, LVAD means more time with their families
Now both sisters are enjoying life as well as the additional time they have been given with their families. And they would recommend the procedure to anyone asking.
“I feel amazing and lost 50 pounds. I can do everyday activities again, although a little differently with the LVAD attached to my body. But, I’m alive and getting stronger as I await a heart transplant. As for those considering getting an LVAD, I’d tell them it’s not a walk in the park, not an easy overnight fix, but it is worth it in the long run,” Nay said.
“I’m still here and doing things with my family and that keeps me going. It’s all been worth it,” Muscaro-Assellin added, noting she is working hard at losing weight so that she can be placed on the heart transplant list.
Dr. Deaton noted it was a first for him to implant an LVAD into two members of the same family.
“But, it isn’t surprising given several family members have the same disease,” he said.
The only LVAD Program in western Massachusetts
Accredited by The Joint Commission since 2016, Baystate’s LVAD program consists of specialists from various disciplines at the hospital working together to ensure the best possible results for heart patients undergoing the procedure. Since beginning the program, which is offered exclusively in western Massachusetts at Baystate Medical Center, doctors have implanted LVADs in 11 patients.
Learn more about heart & vascular care at Baystate Health.