Even as a child, Elizabeth Tune of Red Oak couldn’t play like the other kids — within a few minutes of riding a bike or participating in children’s games, Tune would be gasping for breath.
“Since I was little, I’ve always said, ‘My heart hurts’,” Elizabeth, 26, said, putting her palm to an area in the middle of her chest where she has felt pains throughout her life. “They would always say, ‘Well, that’s not where your heart is’.”
Doctors initially diagnosed Elizabeth with asthma as a child and she lived with the shortness of breath, the pain and the realization that she couldn’t participate in the same activities of her classmates and friends.
“I never could run. I never could play sports,” Elizabeth said. “I cried because I couldn’t play baseball.”
“They always thought it was her lungs. They always thought it was her bronchial tubes,” said Johney Tune, Elizabeth’s mother.
She went to Red Oak ISD schools through her freshman year and moved into the Ferris ISD, graduating in 1999. She received her associate’s degree in computer programming from Cedar Valley College and had plans to attend University of Texas at Arlington in 2005 — that is until her condition worsened to the point that she could not attend school.
“I intended to transfer to UTA, but I just never got that far,” Elizabeth said.
While it would take years for doctors to diagnose Elizabeth, she had pinpointed part of her problem at a very young age. When Elizabeth pointed to her aching heart, she was really pointing to an enlarged pulmonary artery meant to carry blood from her heart to her lungs — Elizabeth was living with primary pulmonary hypertension but wouldn’t be diagnosed until September of 2005.
Along with the pain in her chest, Elizabeth experienced various symptoms that would lead her to eight different doctors in 2005, and eventually to Dr. Ashfaq Rasheed in Mesquite.
Her hair fell out and her fingernails quit growing. Her ankles started swelling. Her labored breathing scared her parents and her father, Robert, had a very real fear of not being able to wake her up in the morning.
“She would suffocate when she would sleep. She would sleep for a long time and say that she was tired and if she slept for just three hours, she would feel fine,” Robert said.
“The more she slept, the worse she felt,” Johney said.
“When he said he was scared he would find me dead in my bed, that’s why,” Elizabeth said, pointing to a lack of oxygen traveling to her lungs.
That lack of oxygen would also cause Elizabeth to lose consciousness without warning, which caused Elizabeth to have a car accident while traveling down Interstate 635. While Elizabeth walked away from the accident unscathed, her car was totaled and she decided she probably shouldn’t drive anymore.
As the symptoms piled up, doctors still couldn’t diagnose Elizabeth and some even questioned her sanity. Finally, Elizabeth began seeing Dr. Rasheed in the summer of 2005, who diagnosed Elizabeth with primary pulmonary hypertension.
“He saved my life. I wouldn’t be alive today if it wasn’t for him,” Elizabeth said. “They never guessed it was my heart.”
“You would never think a 25-year-old would have heart trouble,” Robert said.
Although the family was slightly comforted with the knowledge of what was wrong, doctors were not sure how long Elizabeth could live with the condition.
“When I was first diagnosed, they said I may not come out of the hospital,” Elizabeth said. “I had no reaction because I knew they were wrong. But when they told me I couldn’t have kids, I fell apart. That was more devastating than them telling me I might die. I thought, ‘I have come too far for it to end like that’.”
Doctors originally told Elizabeth at the time of diagnosis that without help, she probably wouldn’t live another year.
“It brought the doctors to tears when he figured it out,” Elizabeth said.
“She’s 25 years old. I lost my son at 26 to suicide. There really aren’t any words for it, because we know how it feels to lose a child,” Johney said. “If we didn’t have God in our lives, we wouldn’t be able to handle it.”
Along with primary pulmonary hypertension, Elizabeth also has a slew of other health issues — Hashimoto’s disease, endometriosis, hypothyroidism, hypoglycemia, congestive heart failure and tachycardia. Each day, Elizabeth must take prescriptive medicines to treat these conditions.
“She takes a handful of pills in the morning, handful at lunch and a handful at night,” Robert said, saying she takes about 25 prescriptive medicines daily.
“That’s my life cocktail,” Elizabeth said.
In the past, there were very few treatment options for people with primary pulmonary hypertension.
“Until a few years ago, all they could really do is send you home on oxygen,” Johney said. “Now they have treatments, but no cure.”
While Elizabeth constantly has an oxygen tank in her presence, she also had a few other options. She entered a research study for the drug Ambrisentin, which ended Friday. The drug was approved by the FDA in July and the drug was renamed Letairis. Elizabeth is scheduled to go back for check-ups every three months and get blood tests every month. So far, Elizabeth has seen benefits from the drug. A recent electrocardiogram tested normal for the first time in her life.
“Dr. Rasheed thinks I’m a walking miracle,” Elizabeth said.
With Elizabeth splitting her time between extended hospital stays and time at home, she tries to remain as active and positive as possible.
“There are bad days, but I try to stay positive,” Elizabeth said, adding that she tries to keep a smile on her face at all times, in turn inspiring nurses and doctors to smile, regardless of their bad days.
With the research study behind her, Elizabeth is gearing up for a trip to Disney World around the Christmas holiday, courtesy of the Fairy Godmother Foundation, a Chicago-based national charity that grants wishes to terminally ill adults.
“We got to talking about ‘Make a Wish’ and we were looking for ‘Make a Wish’ for adults,” Elizabeth said. “My cousin found the Fairy Godmother Foundation.”
Elizabeth has been to Disney World once, but has always wanted to go during Christmastime, participate in the Disney World parade and feed the animals at the Animal Kingdom. The Fairy godmother Foundation has arranged a five-night stay at a Disney World resort for Elizabeth and her parents, tickets to Disney World, some meals and various activities during the family’s stay.
“Christmas is a very special time for me because it is a time of celebration,” Elizabeth said.
“The heart doctor just went and told her what rides she can and can’t ride,” Robert said.
Because Elizabeth can’t fly, the family plans to drive to Orlando, Fla., over the course of a few days. The foundation has arranged for some hotel stays along the way and meals, but the foundation is calling for additional funds for gas money and other expenses along the way.
“What we provide, with the help of the caring people who support us, is something that medicine cannot provide — a chance to create cherished memories,” said Stevie Ball, CEO of the Fairy Godmother Foundation. “It is a very unique and powerful gift.”
The Fairy Godmother Foundation relies on private and corporate donations to fund wishes and the foundation has granted over 900 wishes nationwide since 1998.
The time at Disney World will allow Elizabeth and her parents to try out her brand new scooter, which travels up to 15 miles per hour.
“I can be in the lead for once,” Elizabeth says with a smile.
“It’s a real Lazy Boy — you can kick back and go to the store,” Robert said, laughing.
But most of all, the vacation will give Elizabeth a chance to live part of a dream — to see the animals in Animal Kingdom up close, have an extended stay at a resort rather than a hospital and hopefully forget about the doctors, the medicine and her condition for a while.
Elizabeth’s faith has played a big part in surviving the pain, the endless tests and treatments and the uncertainty of the future.
“Without the peace, I never would’ve made it. I’m afraid that without the peace, I would be bitter,” Elizabeth said, saying that she’s happy for her friends who have careers and families. “I’m glad somebody can have it.”
“It helps me know that I’m here for a purpose,” Elizabeth said, saying she can be somewhat of a spokesperson for primary pulmonary hypertension, a rare and often misdiagnosed condition.
The family clings to their faith and the faith of those around them, including their church family at the Oaks Fellowship in Red Oak.
“They’re very supportive,” Elizabeth said of the people at the Oaks Fellowship. “Almost every time I’m in the hospital, one of the pastors comes to see me. It makes you feel better when you have people fighting for you and praying for you.”
The Tune family has formed a very strong team built on their faith and love for each other.
“They stay strong for me and I stay strong for them. No one is promised time, we just live day by day and trust that God will lead us,” Elizabeth said.
“We’re all terminal,” Robert said. “You never know what the day is going to bring.”
For more information on the Fairy Godmother Foundation, visit www.fairygodmother.org. To make a donation to Elizabeth’s wish, contact the foundation at (312) 573-0028 or 213 West Institute Place, Suite 509, Chicago, IL 60610.
E-mail Mandy at firstname.lastname@example.org.