The following blog was originally published on Life Changing Innovation. It has been reprinted below.
Married by Medtech: Natalie’s and James’ Story
A successful blind date is all about finding common ground: a favorite food, a beloved band, or a shared hobby. For Natalie and James, medtech was the missing link. When they first met, Natalie was just four weeks out of her most recent open heart surgery. James had already spent more than 20 years living with diabetes and using an array of medical devices: insulin pumps, continuous glucose monitors, and advanced needle technology, to name a few.
“On our first date, I noticed James’ insulin pump,” said Natalie. “I showed him my pacemaker scar, and we had a great laugh about our collective worth. We played trivia a few weeks later and dubbed ourselves The Mechanical Organs.”
Fast forward to today, just a week before their wedding.
“We’re getting married on Groundhog Day, so we can celebrate our love over and over again every day,” said James.
It’s clear that chronic illness hasn’t stopped Natalie and James from pursuing their fairytale. And medical technology has been there along the way to ensure as smooth a pursuit as possible.
Natalie was born with two heart defects, Atrial Septal Defect and Mitral Valve Prolapse. These defects are known as congenital heart defects (CHDs), a category containing more than 40 unique defects affecting 1 in 100 babies in the U.S. While CHDs are fairly common diagnoses, Natalie’s two defects occur together very infrequently.
“Despite being born with my defects, they weren’t discovered until I was six years old,” said Natalie. “I was too young to understand the nature of my diagnosis, but I remember trying to feel brave and strong going into my first open heart surgery.”
Since then, her treatment has been extensive: additional open heart surgeries, catheter ablations, and, in 2016, a pacemaker implant.
“When I woke up from my pacemaker implantation, I had a very strange feeling,” said Natalie. “Everything had changed – I was now reliant on a medical device. At the same time, nothing changed. I simply had the opportunity to continue living a mostly normal life. It was a profound realization.”
Natalie’s pacemaker uses electrical pulses to control and normalize its rhythm.
“I feel better than I have in probably 15 years,” said Natalie. “I frequently optimize the settings on my pacemaker to fit my lifestyle, needs, and changing exercise abilities.”
She’s also undergone specialized diagnostic testing throughout her care, including exercise echocardiograms, transesophogeal echocardiograms, and even a diagnostic exercise catheter. Diagnostic tests like these help doctors better understand specific conditions and determine the best treatment plans in response.
“I have seen improvements in the technology and treatments along my journey, particularly in the nuances of diagnostic testing,” said Natalie.
Armed with a holistic treatment plan and supported by a dedicated team of doctors, Natalie can spend less time focused on her heart defects and more time focused on her passion: helping others. Natalie is a social worker in homeless services, where her experience with chronic illness and medical technology has proven invaluable.
“I work with many individuals who have numerous and complicated medical and mental health issues,” said Natalie. “Having gone through my own experiences with chronic illness and with the health system, I’ve been able to deepen my ability to provide them with the best care possible.”
This intuitive care is crucial, Natalie says, as there is a heavy psychological impact that comes with serious, lifelong medical conditions like hers. Natalie’s advice for others in her shoes: You are not alone.
“You are more than your diagnosis,” Natalie said. “You can endure and survive more than you think you are capable of. Having a chronic illness can be traumatic. Be kind to yourself. Get involved with your disease community.”
James was diagnosed with Type 1 Diabetes in 1998, when he was just 15 years old. People with diabetes either don’t produce enough insulin or aren’t able to use insulin in an effective way, creating dangerous blood sugar levels. Or, as James puts it, diabetes is like having dirty oil in your car.
“When I was diagnosed, people really weren’t talking about diabetes,” said James. “It was before Y2K and the digital age, and diabetes was just not in the nomenclature. In fact, it was a kind of taboo.”
Just as culture around diabetes was in its infancy, so was treatment philosophy and technology. Insulin pumps were new and weren’t routinely prescribed; when they were prescribed, it was only after a patient had mastered traditional disease management with multiple needle pokes and insulin injections a day. Fortunately for James, he was able to access insulin pump technology earlier than most.
“I was told I was one of the first children to be given a pump in Wisconsin at the children’s hospital, right at the beginning when this technology was really taking off,” said James. “The pump was such a help in terms of regulating sugar. I think doctors realized it was important to get children the best treatment possible as soon as possible.”
Within a few years, the best treatment was getting even better. Medtech innovators were unveiling continuous glucose monitors (CGMs), tiny sensors inserted under the skin that measure and continuously track blood sugar levels. Information is most often transmitted to the user’s insulin pump. James participated in a CGM trial while he was in college, but he didn’t adopt the technology full time until 2016.
“With the CGM, I always know how I’m trending,” said James. “I know where my blood sugar has been, how it’s moving, and where it’s going. Before the CGM, I could only get an individual snapshot in time with no real context.”
Now, James says he would never give up his CGM.
“It allows me to feel secure,” he said. “Before my CGM, when I went to a wedding or a concert or any place where you’re stuck in one spot, if I started feeling a flux in blood sugar, I’d have to disrupt. Now, I can live without a lot of concerns.”
In fact, thanks to advancements in medical technology like the CGM, James is able to work his dream job, something he once felt was impossible.
“Before I was diagnosed with diabetes, I thought I would just move to the mountains and live off the grid,” said James. “But once I was diagnosed, I felt like I couldn’t do that. Today, the way medical advancements have come, part of me feels like I could do that now.”
While he isn’t quite off the grid, he is in the mountains quite often. James works as a nature photographer and videographer, hiking multiple miles a day through remote stretches of land.
“I do a lot of things I wouldn’t be able to do without the CGM and insulin pump,” said James.
A Medtech Match
As Natalie and James look forward to their wedding, they’ve reflected on the role medtech has played in their relationship.
“I think the most fulfilling part of our journey as a couple has been learning to trust each other,” said Natalie. “We have both lived with our illnesses for most of our lives. We know ourselves better than anyone ever will. I have to trust James if he says his low blood sugar is not an emergency just like he has to trust me when I say a particular arrhythmia or heart symptom of mine doesn’t require a trip to the emergency room.”
James echoes Natalie’s sentiments.
“Our journeys with medical technology have created a kind of kinship,” said James. “We understand what each other goes through, and we’re supportive of each other when times are tough. We help put things in perspective, help ground each other, and relate.”
To other couples living with chronic illness, Natalie and James send encouragement.
“Having a chronic illness complicates an already difficult life,” Natalie said. “At times it’s overwhelming. But our chronic illnesses have also enhanced our humanity, deepened our empathy, and shown us beauty in unexpected places. They have made us resilient. They have brought us connection and community.”
That connection and community will shine extra bright this Groundhog Day and every Groundhog Day after.