This Story With Heart is a contribution by writer Kelly Koepke. Kelly’s mother-in-law Tollie spent years as a medical professional, but still struggled with being comfortable with her own health issues. She shares her story here to help others overcome their own fears about their health, and to learn how to become advocates for their own care. 

Tollie Pizzolato, a Minnesota grandmother of eight and breast cancer survivor, had been having symptoms for years – fatigue, lightheadedness, racing heart and episodes of feeling like she was going to faint. She and her doctors wrote off her experiences to other causes: chronic low hemoglobin (a result of life-long, progressive celiac disease), being at higher elevations when visiting her children, dehydration, or the side effects of medications prescribed because of her cancer. What she didn’t expect was a diagnosis of sick sinus syndrome.

pacemaker

Tollie with her grandkids, after receiving her diagnosis and treatment for sick sinus syndrome.

“I would tell my doctor what was happening at my annual visits, but because of my other conditions and medications, we never went any further,” she says. “Finally, I switched doctors last June. My new doctor listened to me and suggested seeing a cardiologist.”

That’s when this retired obstetrics nurse, who spent almost 50 years caring for mothers and new babies, first heard the words “sick sinus syndrome.” A malfunction of the sinus node, the heart’s pacemaker, causes this group of abnormal heart rhythms. Also called “sinus dysfunction” or “sinoatrial node disease,” the condition causes the heart to beat too fast, too slow, experience long pauses between beats or a combination of all of these. Though many people have few or no symptoms, Tollie had had all but one the signs of sick sinus syndrome (chest pain) for many years.

In fact, many of the signs of sick sinus syndrome are the result of reduced blood flow to the brain because the heart is beating too fast or too slow:

  • Fatigue
  • Dizziness or lightheadedness
  • Fainting or near fainting
  • Shortness of breath
  • Chest pains
  • Slower than normal pulse (bradycardia)
  • Faster than normal pulse (tachycardia)
  • A sensation of rapid, fluttering heartbeats (palpitations)

Sick sinus syndrome is more common in aging adults, where, like Tollie’s case, the cause isn’t specifically known. For younger people, and children, sick sinus syndrome can be a result of previous cardiac surgery or other scarring to the heart muscle. There is often no hereditary component, though individuals should tell their doctors if a close relative has the condition.

“I was sent for an echocardiogram, then wore a heart monitor for two weeks – even in the shower – that tracked every beat of my heart. After the results came in, I saw that my heart was beating sometimes as few as 30 times a minute and sometimes as high as 170. And sometimes it wouldn’t beat at all for up to 4 seconds. I had no idea that my heart was fluctuating so much!” she adds.

Turns out, Tollie’s sinoatrial node was “shorting out.” She needed a pacemaker to regulate her heart rhythm. Changes in diet, which was already good, and exercise wasn’t going to help.

“Initially, I felt like my life was over because I had a heart condition. I shed a lot of tears, feeling like it was a sign of the beginning of the end for me and I should give up and die. That I should say good bye to my children and grandchildren. Right up until the day they put the pacemaker in, I thought about not doing it because I was sure it was the end for me. But the cardiac nurse told me something that changed my outlook. She said, ‘Your heart isn’t failing. Your muscle is good. It’s just the electricity in your heart that needs to be fixed.’”

Those words were what Tollie needed to hear to look at sick sinus syndrome in a completely different way – as something manageable with a pacemaker and medication. In fact, the cardiac nurse’s perspective helped trigger Tollie’s decision to retire at age 71 – she didn’t want to continue putting off spending time with her far-flung family for “some day.”

pacemaker

Tollie received a pacemaker to alleviate sick sinus syndrome.

“You have to be an advocate for own health,” she says. “I’m a nurse and should know better. But didn’t. I trusted when my doctor said the symptoms were because of other issues. And there was the fear about knowing what was really going on. My advice is that if you have symptoms, you can’t just think ‘it’s nothing or it’ll get better, or I don’t want to know.’ Continue searching for answers.”

Tollie’s adjusted to life with a pacemaker, and she hasn’t had another dizzy spell or bout with fatigue. During her first check of the pacemaker after installation, the doctor told her that the device was kicking in more than 35 percent of the time.

With this electrical device in her chest, she can’t go through the standard x-ray screening at airports, spend too much time close to microwave ovens or induction cooktops (this last no-no required a minor adjustment in her newly renovated kitchen) – electrical and magnetic fields could short out or interrupt her pacemaker’s function. And in a decade or so, the battery will need to be replaced. Overall, she says these minor adjustments to her lifestyle are just that, minor, and she doesn’t really notice the silver-dollar sized disc just below the surface of her chest.

Tollie’s heart still races at times – mostly when she’s playing with her young grandchildren. She knows she’s never going to run a marathon – but she never did before being diagnosed. Walking the maternity ward for half a century, and chasing after six children and scores of nieces, nephews and now grandchildren were her primary modes of exercise. Now this grandmother looks forward to enjoying an active retirement with her family for many years to come.

Related: Why You Need to Advocate for Your Own Health: Dante’s Story, How One Heart Saved Two Lives, Habits and History: One Woman’s Experience With Heart Disease