A wrong diagnosis led Stephanie Hernández to be treated for a different cardiovascular condition.
“My health is not 100%, I can not lead a normal life like anyone else, says Stephanie. Photo: Magazine of Medicine and Public Health.
We spoke with Stephanie Marie Hernández Torres, who is currently 32 years old and despite being born with heart problems, a wrong diagnosis led to her being treated for “a murmur and arrhythmias” and today she is waiting for a heart transplant due to the hypertrophic cardiomyopathy.
According to Hernández, at the age of 15 he began to present certain specific symptoms: “I was short of breath, sometimes I fainted, I got tired if I ran, I mightn’t keep up with the rest.”
On hypertrophic cardiomyopathyaccording to Dr. Edmundo Jordan, cardiologist and past president of the Puerto Rican Society of Cardiology: “Properly treated this disease, the mortality rate is less than 1%.”
However, Hernández is currently on the waiting list to receive a heart transplant, although she has already undergone surgery and a cardioverter defibrillator was implanted in the surgical procedure.
What is the disease hypertrophic cardiomyopathy?
in this disease cardiovascular, the heart muscle thickens (hypertrophy) and this thickening of the heart can make it harder for the heart to pump blood. Hypertrophic cardiomyopathy often goes undiagnosed because many people who have it have few symptoms.
However, in some people who have hypertrophic cardiomyopathy, thickening of the heart muscle can cause shortness of breath, as in Stephanie’s case, chest pain, or changes in the heart’s electrical system, resulting in irregular heart rhythms. or arrhythmias that put patients’ lives at risk.
A way to notify that something is wrong
In Stephanie’s case, the symptoms gradually increased over time, and she thought it was due to being overweight, “but by then I wasn’t plump, I was pretty skinny. I started exercising and then everything got worse because while training I had a faint and a seizure, ”she recounts.
They took her to the hospital, admitted for emergencies but within the medical check-ups nothing was discovered. “I remember that the doctor who was in the emergency room told me that what I had was a panic attack, that I was too young to have anything, and that I had to take things easy,” she explained regarding her first diagnosis.
the correct diagnosis
Hypertrophic cardiomyopathy usually runs in families. People with a parent with the condition have a 50% chance of having the gene mutation for the disease. Therefore, it is important that parents, children, or siblings of a patient with the condition consult their health care providers regarding testing for hypertrophic cardiomyopathy.
Hernández comments how the correct diagnosis was reached during a medical check-up: “they told me to crouch down, I did it five times and I fainted doing that”.
They left her hospitalized and continued the exams because the doctor still did not know what she might have, he sent her to Dr. Enrique Carrión Vargas, a pediatric cardiologist, dedicated to congenital diseases and “when I was 27 years old, he was the one who found my cardiomyopathy hypertrophic and that’s where my process began”.
Stephanie’s process: interventions and check-ups
In the first operation, they made a cut in the left side of the heart so that it might pump blood to the body. In the second operation they did the same thing on the opposite side due to the consecutive fainting spells he was having: “when they did a transesophageal echocardiogram, they discovered that the pulmonary vein was being obstructed.”
He remained in intensive care for five days, and four months with his lower extremities swollen: “I thought I was going to come out quickly like the first time I came out well, I recovered quickly, and the same day I came out of the operation I told my couple to take me to San Patricio for a walk… For the second time I didn’t see the light to recover, but I did it”, he recounts.
Despite his optimism, the treating doctor told him that he had already had two surgeries and the risks were increased by a third, so the transplant was now the ideal option: “what you need is a new heart so that you can have a quality of life like any other person”, Hernández explained regarding the words that his doctor told him at that moment.
Your current health and heart
Stephanie has to follow a treatment with atenolol, a medication that is part of the beta-blockers, normally used for the treatment of heart attacks and its function is to relax the blood vessels and slow the heart rate to improve blood flow. and lower blood pressure.
“I am taking 15 tablets of 100 mg of atenolol, the medicine relaxes the heart muscle so that it can pump smoothly without any effort.” However, he details: “My health is not 100%, I can’t lead a normal life like anyone else: I can’t dance, I can’t walk a lot because I get tired. I go little step by little, slowly, I sit down, rest and once more; I have had many fainting spells because I don’t get oxygenation. It’s been a bit difficult,” he stated.
a heart transplant
Data from the Division of Transplantation (DOT), of the Office of Health Care Systems of the Health Resources and Services Administration in the US Department of Health and Human Services (HRSA), reveal that the Demand for organ transplants far exceeds the supply of donor organs available in the United States.
The report indicates that as of July 7 of this year, there were 106,074 people on the waiting list for organ transplants, and 3,442 on the heart transplant list. It also reveals that an average of 17 people die every day on the waiting list for organ transplants.
This process has been even more complex for Hernández as she recounts that she first went into depression, then COVID-19 arrived and faced with the fear of death that the pandemic brought with it, doubts began to arise in her to continue seeking the transplant: “I had I had to stop everything, and I wasn’t going to go to a hospital to get sick and more than that they said that people were dying,” he says.
However, she resumed the process with the support of her partner and loved ones, who encouraged her to continue in search of a transplant and now she is waiting for her new heart: “although deep down, I do not ask God to give me a heart because my family will be happy, but another family will suffer. I prefer that it give me quality of life, that I can live a little longer, ”she declared.
Pay for your heart transplant
According to Stephanie, the value of this procedure is $179,000 dollars, of which the Catastrophic Fund provides a part, a foundation supports her with another amount and the deductible is her responsibility: “Right now there were 10 thousand dollars missing, I collected 3,500 Dollars. The difference is what is missing”.
Medical expenses are the most complex part of the transplant, and he ensures that the medical plan does not cover everything: “When you start this process, they tell you that you have to pay for it. It has been difficult because my partner is the one who works, he covers all the medical expenses, those of the home. In addition, he has a girl with special conditions and needs medication. It is difficult, we are four”.