Marjaan Barbano, LQTS Type 5
We are now Thryv.
LQT Therapeutics Inc. has changed its name to Thryv Therapeutics Inc.
Early in the morning of October 1, 2019, Marjaan Barbano was awakened by her dog, Moose, so she got up and comforted him with a little rub on the belly. She remembers blowing her nose and returning to bed to continue her sleep. Then, the next thing she remembers is a bunch of unknown attendants trying to get her body to cooperate with a wheelchair at her local Emergency Room.
Her husband, Andrew, had been awakened by gasping, choking noises coming from Marjaan. Immediately recognizing something was wrong, he turned on the lights and struggled to get her to come to. After a couple of frantic minutes, he was able to get enough responsiveness from Marjaan to get her laid out in the back seat of his car and drive her to the Emergency Room less than five minutes away from their home.
Marjaan had suffered an asystole cardiac arrest and had endured a flatlined heart rate for two minutes, an occurrence with an approximate one percent survival rate. She had beaten the odds, but her early-term pregnancy, the couple’s first, had tragically ended with a miscarriage.
“Ever since I was little, I have fainted one or twice a year, and it’s even happened when I was swimming underwater. My entire life, it seems I have fainted all the time, and I’ve seen many different doctors over the years,” Marjaan recalls. “Through them all though, there were just ideas that I was overly sensitive, or that I had a very strong vasovagal syncope response.”
In 2018, while Marjaan was finishing her final year of college, she experienced what she recalls as “crazy” heart palpitations, eventually seeking treatment at the Emergency Room. During that consultation, the ER doctor asked her if she or anyone in her family had been diagnosed with Long QT Syndrome, or if anyone in her extended family had died suddenly and unexpectedly. Despite her answers to the negative, he referred her to a cardiologist.
At her cardiologist appointment, they talked about Long QT Syndrome, but based on her family history, did not initiate any immediate tests. However, in just a couple weeks time, fate intervened.
A cousin of Marjaan’s mother is an airline pilot, and during his annual physical an abnormal EKG showed he had an extremely long QTc interval. So high in fact, he immediately had Left Cardiac Sympathetic Denervation (LCSD) surgery done at the Mayo Clinic, before the results of his Long QT Syndrome test had been returned. Due to the findings, Marjaan’s test was prioritized and rushed, returning with a positive Long QT Syndrome Type 5 diagnosis. After Marjaan’s diagnosis, her entire family was tested, with over half coming back positive for Long QT Syndrome.
Out with Loop Recorder, in with Pacemaker. January 2020
“When I was finally diagnosed,” Marjaan recalls, “I was actually very relieved. For all these years, I just knew something wasn’t right. Finally, it was a relief to have an answer, and in reading about Long QT Syndrome, I found that it describes all of my symptoms!”
Upon her diagnosis in April 2019, Marjaan began a daily dose of beta blockers and had an implantable loop recorder inserted just below the skin on her chest. It was that loop recorder that recorded her October cardiac arrest and the two full minutes of flatlined heart rate.
“After my cardiac arrest, I was admitted to the hospital for five days, during which I had my loop recorder removed and replaced with an implanted pacemaker. I also had low potassium levels, so I started taking prescription potassium to go along with my daily doses of beta blockers,” Marjaan says.
“I was pregnant when I suffered the cardiac arrest, and we went through a miscarriage. Then, in recovering from the cardiac arrest, we went through yet another miscarriage. I’m pregnant once again, with a boy due on Christmas Day, and since there are so few LQTS Type 5 patients, much less pregnant LQTS Type 5 patients, my doctors and I are kind of making it up as it goes.”
“For me, it’s been helpful to find other people who have Long QT Syndrome, as well as those patients who have suffered through cardiac arrests. It’s so difficult to find others who have Type 5, and difficult too to find pregnant patients, so I’m hopeful by sharing my story I can become a resource for those who don’t have such a common type of LQTS or those who have other extenuating circumstances.”
Awaiting the newest member of their family, Marjaan works in radiology scheduling at a large hospital system in Phoenix, Arizona, while Andrew finishes his final year of graduate school on his way to a career as a Physician Assistant. Marjaan, too, has her sights set on an expanded career in health care.
“Prior to being diagnosed with Long QT Syndrome, I had taken the MCAT (Medical College Admission Test) exam and applied to medical school, with aspirations to study allergies and immunology. Then, LQTS intervened, and I don't think medical school will work. Now, however, I’m planning on getting a masters degree in genetic counseling - it’s something I have a great personal interest in.”
