Snelling mother urges others to listen to bodies after medical issues, misdiagnoses

A mother of four in Snelling is urging people to listen to their bodies and look into their family medical history after a slew of misdiagnoses prohibited her from finding out she had congestive heart failure.

26-year-old Margaret Allen underwent a heart transplant in early 2022 that may have been prevented if she received adequate care.

“Being neglected added on to me neglecting myself. It's an endless cycle of negligence and not getting the help that you need,” said Allen, who hopes her story will push someone to speak up about symptoms they may be ignoring.

It began in late December 2017 when she had complications during her pregnancy with twins. Allen underwent an emergency c-section with two boys at 23 weeks pregnant. The twins, Markelle and Jamelle, each weighed one pound and seven ounces.

Due to their premature state and other various complications, the newborns were both fighting issues such as bowel perforation, grade four brain bleeds, and holes in their hearts.

Jamelle experienced some of these issues more severely than Markelle. His entire bowel perforated, which led to kidney failure and sepsis, resulting in his death eight days later.

“After they take my baby away, I'm walking across the hall right to the other side of the NICU to see the other one,” said Allen, who was still caring for her surviving twin, Markelle, at the time.

Allen was staying at a nearby Ronald McDonald house caring for her eldest child, Sydney, who was three years old at the time, during Markelle’s six-month stay in the NICU.

“He does not walk, talk, crawl or anything. He has seizures, cerebral palsy, and he's blind,” said Allen of Markelle. “He's a big boy when he stands when you hold him up, but in my arms, he's a little baby. I call him my forever baby.”

The following year while caring for Markelle and Sydney, Allen was experiencing what she believed to be panic attacks. She would feel her heart beating in overdrive and would become short of breath.

At the time she attributed it to anxiety, something she dealt with previously and could handle with controlled breathing and relaxation.

“It feels like my heart is going to stop beating,” said Allen. “Even then it was a little too extreme to be anxiety.”

Allen is attuned with her body, and can usually tell the difference between anxiety and a larger issue. At this time, she knew it was something more.

“I started to feel that anxiety, that workup, that feeling like something bad was going to happen. Anxiety gives off the same thing, but it wasn't anxiety. It was my body warning me something is about to happen,” said Allen.

A year or so went by where Allen was experiencing episodes of a tightness in the chest, shortness of breath, and rapid heartbeats. She kept dismissing it because those around her were too.

“During this time, I didn't really have one supportive person,” said Allen. “My family was really skeptical.”

On February 25, 2021, Allen got into a car accident while 35 weeks pregnant with her youngest child, Marley. Her car hit a telephone pole resulting in Allen having a distal femur fracture, a ruptured spleen, and her daughter being without oxygen for 10 minutes.

“The day of my car accident is also her birthday,” said Allen, who underwent another emergency c-section to save her daughter's life after the accident. Allen finds it ironic that she was scheduled for a c-section just a week later.

Allen was left with metal in her leg and forced to learn how to walk again, all while caring for three disabled children.

After all of this, she was still discouraged from taking her ‘anxiety’ seriously by those close to her and continued to feel swelling in her chest.

“I didn't have one supportive person. It was, ‘Oh, you're having anxiety.’ ‘Oh, you're just doing too much.’ ‘You're faking it.’ ‘You're not as sick as you think you are,’” said Allen. “And mind you, I have three disabled children and I'm disabled myself, so during this time I'm not having a lot of help.”

Although the tremendous stress, car accident, and other factors of these pregnancies did not cause her heart issues, many medical personnel along the way attributed her symptoms to them.

Ten months after the accident in December 2021, Allen’s symptoms started to worsen.

“Eventually it started to get to the point where it was hard to breathe,” said Allen. “I started to feel a very full feeling in my head. I couldn't really bend over and where it was just debilitating and crippling.”

When feeling an episode come on, Allen would call 911 to bring Medshore medics to her Snelling home.

“Nobody is really thinking that I'm as sick as I am, which I haven't got a diagnosis at this time, but I'm in the hospital every day and calling the ambulance like every day,” said Allen. “And once I let them know that I had anxiety, it was like they didn't hear anything else.”

“The ambulance would come out to the house and they would just kind of give me that look like, ‘All right Ms. Allen, this is the third time we've been out here this week, this is the second time we've been here today,’” said Allen.

However, Allen knew something was seriously wrong and continued to feel alone in her thinking.

After countless trips to Regional Medical Center-Bamberg (RMC Bamberg) and Barnwell Family Medicine with no solutions resulting in less pain, she went to the Allendale County Hospital where she was misdiagnosed with bacterial bronchitis.

“The people closest to me were the people who were disregarding the most, and then the people in medical care that were supposedly taking the utmost care of me, also neglected me,” said Allen.

Throughout the entirety of this saga, Allen did her own research. She understood that fluid around your lungs will stop them from expanding and result in feeling suffocated. She knew a doctor would not hear the fluid around her lungs through a stethoscope. She knew she needed a chest x-ray.

On January 3, 2022, Allen went to Bamberg-Barnwell Emergency Medical Center in Denmark where she found out her heart was enlarged.

“I've been pregnant, I've had a lot of traumatic pregnancies, I've had a car accident, I've had COVID four times, once while pregnant,” said Allen. “That's what they're leaning towards. Those are the questions they're asking.”

Medical personnel did not think congestive heart failure was in the cards for Allen and explained to her why they did not perform serious testing: “You are too young. We just wouldn't test seriously for those things unless you have them in your family.”

At the time, Allen did not know her family medical history.

Here is when she was referred to a cardiologist in Orangeburg and went for her first appointment at the practice in early January 2022.

“I started to feel hopeful that I would get the help that I needed and that somebody would figure it out,” said Allen.

However, this was not the case.

“He turned out to be very negligent in his care,” said Allen of the cardiologist.

Here, Allen was diagnosed with cardiomyopathy - a weak heart - and cardiomegaly - a slightly enlarged heart - which are indicators of congestive heart failure. The cardiologist insinuated that this was caused by stressful pregnancies and postpartum, and prescribed Allen medication.

“When they find out that you have congestive heart failure, the first thing that they do is they put you on a sodium and a fluid restriction,” said Allen, who struggled with this dietary change.

She was limited to 64 ounces of water in a 24-hour period, and even a sip would bring on more retention.

“I'm at the point where my body is retaining fluid because my heart is not working properly. My other organs are not working properly. My body is not breaking down salt into fluid and getting rid of the fluid. At this point I'm urinating like once a day, if that, and it's a struggle,” said Allen.

Allen remembers times when she would gain nearly five pounds in one day from the fluid retention. However, she was relieved to have a diagnosis that made sense and was able to learn more about how to live with congestive heart failure.

“I got a diagnosis, so I don't have to worry about the ambulance not taking me seriously anymore,” said Allen, who still relied on EMS personnel when she was experiencing an episode. “But then the next time they come out, they're giving me that look.”

“I have congestive heart failure. I have a real problem,” said Allen, who was hoping a diagnosis would make Medshore EMS personnel take her seriously.

“They’re like, ‘Well because you have anxiety though, now you're gonna fixate on that,’” she said. “Now I have to worry about when I call 911 if they're going to assume that I'm having a panic attack and take their sweet time. And by the time they get there, I'm dead.”

“I'm worried that I'm going to be on the floor and my kids are just going to be in this house with me and they can't help me. All of them are special needs. Nobody can call the police for me or the ambulance for me,” said Allen. “I'm fearing for my kids. I'm fearing for myself.”

Allen returned to her cardiologist as her symptoms worsened to be informed her heart function was at 35 percent and continually declining.

“They found that I had mitral valve regurgitation, so one of my heart valves was not working properly. It was not opening and closing properly. It was allowing blood to go in areas that it shouldn't be, which was causing my heart to work harder and was causing it to enlarge and weaken. It was just a domino effect,” said Allen.

After floating through the month of February on medication and nightly visits to the emergency room throughout March, she was still without support or feeling better.

“I was suffering. Dizzy, nauseous, throwing up, almost blacking out, constantly feeling like your heart is going to just stop beating, constantly checking my blood pressure at home and it's either extremely high or dangerously low,” said Allen.

“What I didn't know is that a lot of those times I was in cardiogenic shock,” she said.

Allen explained one of the last times she visited RMC Bamberg with a 35 percent heart function and experiencing these symptoms, they sent her home almost immediately.

“A lot of times where I could have gotten extra help, I didn't because they made me feel like I was one of those people that were asking to use the resources that didn't need them,” said Allen. “So, I didn't go to the extra yard.”

At the end of March 2022 her symptoms worsened even more so, and she asked the staff at RMC Bamberg to refer her to a hospital that might take a different approach.

“Most people when they get diagnosed with medication and changing their diet and stuff, they can go years with that same heart function. It just does not deteriorate as quickly as I deteriorated. And that's because I was neglected,” said Allen.

Allen was eventually transferred to the Lexington Medical Center. After conducting testing, her heart function was roughly 15 percent to 20 percent and she had three leaking valves.

“The only valve that was not leaking, thank God, was my aortic valve,” said Allen. “The tricuspid valve, the pulmonary valve, the mitral valve, all of those were leaking.”

The team at the Lexington Medical Center immediately transferred her to the Medical University of South Carolina (MUSC) in Charleston.

“This was where I actually started to feel like I could sit back and breathe. I felt safe. I felt heard and listened to,” said Allen of the MUSC staff.

At this point, Allen was facing terminal heart failure or a heart transplant.

The MUSC team placed a balloon pump in Allen’s chest to keep her heart beating. Inserting a balloon pump puts a patient on a priority list for a heart transplant.

Between the balloon pump and the transplant, she went into bilateral heart failure.

To her surprise, she was on the organ list for two days before she got a call on Easter Sunday in 2022 from the head of MUSC cardiology.

“I had my heart transplant the next afternoon,” said Allen. “The donor was a young male and I know that he overdosed. His heart was a little bit bigger than my chest cavity, but it was otherwise a perfect fit.”

While at MUSC, Allen was informed her heart failure was genetic. She then urged to have conversations with her family members about their health.

Allen hopes her story will push at least one person to advocate for themselves and take their symptoms seriously.

“I had to learn that the hard way because I look at hospital staff as authority figures,” said Allen. “So, I don't like to go in there and say, ‘I want this.’ But it's gotten to that point. Now, I do walk in the hospital and I do advocate better for my children.”

Allen hopes readers will ask for the extra test, ask another question, get a second and even third opinion if needed, and trust their bodies.

“You know your body better than anybody. If something is not right, don't even ask anybody else what they think. Do what you think you should do,” said Allen.

Allen believes if she had more support and was encouraged to self advocate by family throughout this endeavor, she may have been able to get help sooner.

“It just baffles me that not one place could offer any good care. Luckily, we all made it. Thank God we made it out,” said Allen.