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HCA Midwest Health

Emma Nelson

A racing heart rate, feeling out of breath and fainting spells, crippled Emma Nelson for nearly 20 years.

December 07, 2023
Emma Nelson smiles while sitting in a hospital bed, with several medical tubes hooked to her hand and face.

Emma Nelson was at her wit’s end when she arrived at Kansas City Heart Rhythm Institute — a part of HCA Midwest Health — in the summer of 2021. For years, she had been seeking answers to why her heart would frequently race, and she would often pass out for no apparent reason. Feeling like she had lost all hope of ever living a normal life, just a few months earlier Emma had swallowed a handful of medication in a desperate attempt to get relief.

Fortunately, Emma’s husband found her unconscious body. She woke up three days later in the intensive care unit happy to be alive but still without a clear path to better health. After seven days in ICU and another three on the cardiac floor of her local hospital, she headed back home to face an uncertain future.

Emma first started noticing that her heart was racing at times when she was around 10 years old. She told her mother that after these episodes she felt tired. She fainted for the first time when she was 13, adding another clue to the mystery. Curious about what was going on with her body, Emma went to the doctor to get some answers. After examining the youngster, the doctor’s unofficial diagnosis was an eating disorder. Emma had always been slightly built, which may have added to the doctor’s assumption that she was not eating and drinking properly. “I swore up and down that I wasn’t skipping meals,” she says. “But he wouldn’t believe me.”

When his first theory didn’t work out, the doctor soon moved on to another possible cause — a blood sugar issue was causing a chemical imbalance that led to her symptoms. Finally, the doctor concluded that it was all in Emma’s head, leaving her without a definitive diagnosis. So, she forged ahead until her third year of college when she was referred to a heart hospital in Arkansas. There, doctors diagnosed her with neurocardiogenic syncope, also known as vasovagal neurocardiogenic syncope, which are fainting spells that occur when the body overreacts to certain triggers, like intense emotion, the sight of blood, extreme heat, dehydration, a long period of standing or intense pain. The treatment was to drink more water and eat more salt, which Emma tried — but the fainting continued. They also tried a variety of medications, but those failed to provide long-term relief, and the side effects just made her feel worse. Eventually, she was diagnosed with postural orthostatic tachycardia syndrome (POTS).

When she was 25, doctors told Emma that a pacemaker with rate drop response would bring her fainting episodes under control. Believing that at long last they may have found a definitive solution, she happily signed on to have the pacemaker implanted. But just like every other remedy she had tried, within a few weeks the fainting was back. Frustrated by the outcome, Emma’s doctor began blaming her for the failure. He said she was not properly following his instructions for nutrition and hydration.

“I felt like the doctor had given up on me,” Emma says. “He wasn’t listening to anything I had to say.” So, the next time Emma went to the doctor, her father went along for support. Together, they insisted she see a specialist. They had heard that a hospital in Nashville, Tennessee, had an excellent autonomic dysfunction clinic and asked to be referred there. The doctor told them it was a waste of time but begrudgingly gave them the referral.

Once she arrived in Nashville, the doctors performed all sorts of tests on Emma before diagnosing her with Ehlers-Danlos Syndrome, POTS and small fiber neuropathy. Over the years, she was prescribed various drug regimens trying to find the right answer, but none of them worked long term. Meanwhile, she was feeling sicker and sicker. And then, just two weeks before her suicide attempt, Emma sent a desperate message to her doctor begging to try something else because things were getting progressively worse — she got no response.

“At this point, I was out of options and had lost all hope,” Emma says. “I was looking at a long life on the couch alone while my husband worked tirelessly to pay the bills. I tried not to internalize the guilt, but it was my body that was failing. It was my fault. If I could eliminate the source of the problem, everyone could move on with their lives and not be stuck with me.”

In the time following her suicide attempt, a cardiologist at Emma’s local hospital planned to start her on yet another medication, but she and her husband resisted. So instead, he referred them to a heart specialist in Little Rock, Arkansas, and that’s when things slowly started to look up. The physician said early on that he didn’t have the skills required to solve Emma’s problems, but he knew somebody who did — Dr. Dhanunjaya “DJ” Lakkireddy, M.D., medical director and cardiac electrophysiologist at Kansas City Heart Rhythm Institute. “I remember he told us, ‘I’m sending you to the best place in the country to get help,’” Emma says. “A few weeks later, I got a call from Kansas City Heart Rhythm Institute. As soon as I hung up, I burst into tears. For the first time in a long, long time they were tears of hope and not sadness.”

She wasn’t expecting miracles when she arrived in Kansas City. She said she just hoped to return to some level of normalcy in her life. She and her husband were both very nervous on the day of the appointment, but that trepidation quickly faded as Dr. Lakkireddy listened intently to Emma describe everything that had been going on since her symptoms began.

“After listening to her story and examining her charts, I began to explain to Emma and her husband exactly what was going on with her body and why medications and other treatments hadn’t worked,” Dr. Lakkireddy says.

He explained that Emma had inappropriate sinus tachycardia (IST), a condition where the heart beats too fast for no apparent reason.

“Emma is a classic case of IST,” Dr. Lakkireddy says. “IST mainly affects young women and can cause palpitations, fatigue, lightheadedness and exercise intolerance. It can also go undiagnosed or misdiagnosed for years.”

Dr. Lakkireddy recommended a procedure called sinus node-sparing hybrid ablation procedure. A cardiac surgeon — in collaboration with a cardiac electrophysiologist — performs this advanced, minimally invasive procedure to treat and cure inappropriate sinus tachycardia. Dr. Lakkireddy walked Emma through the surgery, thoroughly explaining the risks and recovery. He even brought cardiothoracic surgeon Ahmed A. Romeya, M.D., to meet them during the consultation.

Emma had modest expectations. She hoped to simply be able to get back to some sort of independence; to at least cook her own meals and take a shower on her own. Emma says she and her husband were shocked yet skeptical when Dr. Lakkireddy told them, “Oh, I’ve had patients who have gone back to work.”

Drs. Lakkireddy and Romeya performed Emma’s sinus node sparing hybrid ablation procedure Monday, Aug. 23, 2021, and by Thursday she felt well enough to make the seven-hour drive home to Bald Knob, Arkansas. Emma knew how important her cardiac rehab would be in determining the success of recovery. She was laser-focused on gaining back as much of her life as possible. Rehab went surprisingly well. So well, in fact, that by the end of December 2021, she felt healthy enough to land a job in her old school district.

“In less than a year, I’ve gone from hitting rock bottom when I attempted to take my own life to being able to drive myself to a fulltime job,” Emma says. “I still faint and sometimes I still have to miss work. I have to watch my diet and I am still on blood pressure medication — but it’s nothing at all like it was before. It’s much more manageable now.”

Emma has accomplished many things to celebrate getting her life back on track. She climbed Sugar Loaf Mountain in Heber Springs, Arkansas; watched her brother marry the love of his life in Florida; went shopping by herself; celebrated her 30th birthday; spent an entire day baking Christmas cookie with her husband; and helped build a swimming pool in the 100-degree Arkansas heat.

“I’ve lived more in the past year than I had in the previous 10 years combined,” Emma says. “When I say I can’t thank you enough, I mean it with every cell in my body. Drs. Lakkireddy and Romeya changed my life!”

Do you have a family member who has been diagnosed with atrial fibrillation (AFib)? Or maybe you have AFib, and your family members don’t realize they could also be at risk for it. We now know there is a hereditary link associated with AFib. But good news! There are actions you can take to prevent the onset of AFib, and actions you can take to better manage the condition. Learn more and find a physician at Kansas City Heart Rhythm Institute website.

Published:
December 07, 2023

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