Her Heart Stopped Beating
Social Media Correspondents May 17, 2012
By Iysha Batts
She opened the door to her parents’ home and flashed a welcoming smile; a shy, soft spoken woman whose voice sounded more like she was whispering than talking.
She walked around the room, introducing her family, passing a walker that serves more as decoration than a means for assistance. She doesn’t need that walker anymore. She walks just fine now, an amazing accomplishment when you consider that just five years ago Nigeria Evans’ heart was failing.
“She was really a little stage better than a vegetable because we had to teach her how to eat, had to hand feed her; she had to walk all over again. She had to learn all over again this life because she lost ten years of her life,” said Brenda Shuler, Evans’ mother, as she reminisced over how far her daughter has come.
Evans enjoyed a normal childhood and adolescence. Her father, Walter Shuler, recalled that she never showed any signs of being sick. She was always active; a member of the band at Cullen Middle School as well as the ROTC program, School of Communications and the Women of Distinction at Yates High School. She also attended Texas Southern University for two years, where she majored in pre-nursing and worked with the university newspaper, The Herald. However, in 2007, Evans’ life would be forever changed.
It all began one morning as Evans was coming over to visit with her parents. At the time, she was 28 and married to a man she had met while she was in college. On her way up the driveway, she found herself feeling short of breath. The walk from her car to her parents’ front door might as well have been a mile long run. In fact, every task proved daunting after that. She had trouble getting out of the shower. She couldn’t walk more than two feet without feeling weak and out of breath.
Finally, her mother decided that it was time to take Evans to the hospital. It was there that they discovered the extent of Evans’ illness.
Her mother took her to St.Lukes Episcopal Hospital where they found out that Evans had an enlarged heart.
“You know your heart is as big as your fist; her heart was as big as her head. It had lapsed over into her stomach. They showed us a picture and we couldn’t believe it,” said Shuler.
After her diagnosis, Evans was hospitalized. Her heart was failing; no longer able to pump enough blood to her body. It was during this hospitalization that she suffered a series of catastrophic events that would put her in a vegetative state for the next year.
One day, during her month and a half long hospital stay, Evans suffered a total of five heart attacks. Her heart essentially stopped beating a total of five times. The fifth time was the longest. According to her mother, Evans was without a heart beat for approximately 45 minutes as the doctors at St. Lukes worked on her tirelessly. The final heart attack proved to be the most destructive to Evans’ body. Being without proper blood and oxygen flow to her brain for such a long period of time left Evans with severe short term memory loss and a loss of most of her motor skills.
At this point it was clear; Evans’ heart was not going to be able to hold up on its own. She was going to need a heart transplant if she had any hope of surviving. In order to do the work Evans’ heart was no longer able to do, she was placed on a Left Ventricle Assist Device (LVAD). The LVAD’s, as it’s called, function was to essentially take the load off Evans’ heart by pumping much needed blood to the left ventricle, which would then pump to the rest of the body.
The procedure was performed by Dr. Oscar Howard Frazier, Chief of Transplantation and Surgical Director for Heart Transplantation and LVAD at the Texas Heart Institute at St. Luke’s Episcopal Hospital and professor at Baylor College of Medicine. The medical positions he holds and has held are too extensive to list, but chief among them, at least in Evans’ case, is that he stands as the current leader in heart transplantation and LVAD procedures. Frazier has been working with and developing the LVAD for the better part of 40 years.
“She would not have survived without the pump,” Frazier put it simply.
The LVAD was not intended to replace Evans’ heart forever. The fact still remained that Evans needed a new heart if she was going to survive. Before Evans could get a heart she had to be placed on the donors list, but before she could be placed on the donors list, she had to have Medicare and that, according to Evans’ mother, took 24 months.
As the family waited for Evans’ name to be placed on the donor list, they took her back to her parents house and began difficult the task of home rehabilitation. The hospital suggested that Evans go to The Institute of Rehabilitation and Research (TIRR) at Memorial Hermann Hospital and even offered to pay for it, but Evans’ then husband refused, much to the dismay of her family. The hospital did not wish to interfere with family disputes, so they retracted their offer and the Shuler family was forced to rehabilitate Evans themselves.
“We showed her pictures. Her family played solitaire with her and word games and taking her for walks. That’s how we rehabilitated her at home. We didn’t have $900 to pay a month for a care giver. We were the caregivers,” said Shuler. Evans suffered severe bouts of depression during her recovery. Her mother recalled that she would cry all day, every day and would go through several boxes of tissue a day.
Evans and her family were not only battling the debilitating effects of her disease, but also a rapidly failing marriage. Evans’ mother recounted the horrifying details of a son-in-law that wanted his wife to die. According to Shuler, Evans’ ex-husband would come to their house under the pretense of visiting his wife and then secretly try to convince her to pull the life supporting cords from her body.
“We noticed that after he would visit, after he left, blood would be everywhere,” said Shuler, “He was being very difficult because he did not want her to get better.”
Evans’ parents knew that a divorce was needed, but Evan’s husband was desperate to convince anyone that would listen that Evans was incompetent to go through divorce proceedings. According to Evans’ mother, the presiding judge asked Evans her name and when she was able to successfully provide it, he deemed her competent to go through the divorce proceedings. The divorce was finalized on May 8, 2009. Though a slow process, Evans began to react positively to her family’s rehabilitation efforts. She was walking and speaking and, eventually, even cooking again.
“She would get up and cook us breakfast at four in the morning,” said Shuler. “The food wasn’t quite right, but she was trying. She was trying to get herself back together.”
After the two years was up, Evans’ Medicare was active and she was placed on the donors list. Only three months went by before a match was found. Evans’ new heart was going to come from a 21-year-old male, Caucasian, athlete from somewhere up North. Evans received her new heart on December 23, 2009. It is the hope of Evans and her family to one day meet the family of the young man who saved her life.
Evans was fortunate enough to receive her heart only three months after being placed on the donor list, but many of the recipients waiting on the list have been there for years and will be there for years to come. Evans and her mother recalled meeting a woman who had been waiting for an organ match for 10 years.
As it stands, minorities make up the majority of those in need of organ donation, a whopping 55%, and have an increased risk for many of the diseases that cause organ failure. However, the numbers of minorities that actually donate are disproportionate to their need resulting in long waits for some patients and other who die waiting.
The African-American population makes up the largest percentage in need of transplants. As of 2010, the U.S. Department of Health and Human Services reports that African-Americans, who make up roughly 13% of the population, constitute 29% of those recipients on the organ donor waiting list.
Despite the discouraging numbers, minorities are still not donating at a level that matches their need and it is due largely in part to long standing stigma and taboos that still exist in minority communities about organ donation ranging from religious beliefs to personal convictions.
“ I was always told that if you signed up to be an organ donor, they wouldn’t try as hard to keep you alive should you be in a life or death surgery,” said Gladys Pinter, 43- year-old mother of three.
Similar misunderstandings about organ donation affected Evans’ family as well, none of whom were organ donors before Evans’ illness.
“We were told that it’s taboo. We’re raised a certain way and we’re told that if our organs don’t follow us we won’t go into heaven… It’s a fear factor thing; that we’re just afraid of the unknown,” said Shuler.
Younger generations have slightly different reasoning behind their decision not to donate.
“I don’t believe in donating my organs,” said Ariana Williams, a senior at Texas Southern University. “I would if I was alive and someone in my family needed them, but if I’m dead I don’t want my organs to go to somebody else. I want all my body parts in me when I’m dead.” In some cases, the beliefs of the previous generations are passed down to the next, perpetuating a cycle of disbelief in organ donation.
“My grandfather told me I couldn’t do it, because he said that’s not the Christian thing to do. He said if you’re born with it, you should die with it. I share that belief,” said Curtis Edwards, another student at TSU. After Evans’ ordeal, she and the Shuler family had their minds made up about organ donation and its benefits. Mrs. Shuler said that everyone in their family is organ donors now.
“Had no one donated a heart for her, she wouldn’t be here today. She wouldn’t be here to tell her story and we’re very thankful for that,” said Shuler.
Though Evans and her family now know the importance of organ donation, they understand that some people will never see it for the life saving step it is until they need it to save the life of one of their loved ones or their own.
Today, Evans has made an almost full recovery. The medicines she takes to keep her new heart healthy have declined from approximately 22 pills a day when she first had the surgery to 10 pills a day. She now spends her time enjoying things like cooking, reading, watching TV, and socializing on Facebook. She also attends St.Lukes’ bimonthly social and goes to work with her mother from time to time. She volunteers once a week at the Heart Exchange at St. Lukes Episcopal Hospital where she talks with patients about the benefits of LVAD and heart surgery. She also tries to convince patients who are skeptical about having surgery, that the effects can be life saving. “There was one lady who was afraid to have heart surgery, but Nigeria talked her into it. She changed her mind. Had she not, she probably wouldn’t have been here. They see how healthy she looks now. She’s changed quite a few minds to get the surgery,” said Shuler.
She uses her volunteer work at the hospital to encourage patients by telling them her story and listening to theirs. She also visits and participates in several health fairs where she speaks to visitors about the importance of organ donation. “I remind them that it could possibly help save someone in their family’s life and that you can donate your skin, your eyes. Its other things you can donate besides your organs,” said Evans.
Evans is looking toward the future. She plans to return to school within the next two semesters and pursue a teaching degree. Her ultimate goal is to teach high school or college level English. She blushes at the mention of a new relationship and insist that that is the farthest thing from her mind. She is focused on making her life count.
“I’m just excited about my future and all the possibilities that it holds,” said Evans, with a tilt of the head and a sweet silent strength.
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