By AMANDA KIMBLE
TheFlashToday.com
TARLETON STATE (October 4, 2016) – She doesn’t remember her mother. Dana Sadler Mills died at the age of 25. Her daughter, Macie Paige, was still in diapers.
“Macie was 20 months old,” Macie’s aunt and adoptive mother, Darla Duty, said. “Sadly, she has no memory of her mother other than what she’s been told.”
Dana, a 1992 graduate of Eastland High School, died in an Abilene hospital. Her diagnosis was revealed postmortem, during autopsy.
Pulmonary hypertension (PH) is a disease in which the arteries in the lungs become narrow or blocked, making it hard for blood to flow through them and raising the blood pressure in the lungs. The heart works harder to pump blood through those arteries, eventually weakening the heart and making the patient susceptible to heart failure.
“Macie’s pulmonary-arterial pressure was 10 times more than normal, and her heart is enlarged from it being overworked to push oxygenated blood to all of her vital organs,” Darla explained.
Nobody knows how long Dana lived with the disease. Symptoms began to surface when she was pregnant with Macie. The seriousness of her condition came to light when Dana started experiencing shortness of breath and fatigue. She also had a had a swollen abdomen due to her vital organs seeping. One by one, other complications began to arise.
At that time, little was known about PH. Dana’s doctor told her she was “out of shape.” She was told she needed to lose weight. She was at one point hospitalized with hepatitis – a misdiagnosis.
Dana’s condition quickly worsened. First doctors said it was heart failure. Lung problems were later detected. And then Dana’s kidneys began to fail. She died in an Abilene hospital on August 17, 1999, two days after arriving at the emergency room.
Fast forward 17 years, to another August day in 2016. The symptoms had returned. This time it was Macie.
She had just moved to Stephenville. Macie was 18 years old, a recent graduate of Early High School. Months earlier, following a childhood wrought with hard times, she was adopted by her aunt Darla, her mother’s older sister. She had a new lease on life.
Macie was participating in Tarleton State University Transition Week activities and fell instantly in love with the traditions – like the Purple Poo.
Still, any college freshman will tell you their life is hectic – not enough sleep, too many late nights, a lot of excitement and plenty of independence.
But, just days into her college experience, Macie was exhausted. Unnaturally so.
“Macie began telling me about how she got short of breath really easily as she would be walking around the campus,” Darla said. “She was having some leg pain and she complained of her lungs burning.”
Darla’s world seemed to stop. Those same words, same concerns, similar symptoms…They had been spoken by Dana years earlier.
“I knew what it was,” Darla said.
The tell-tale symptoms were not the first Macie had experienced. About three years earlier, she had complained of dizziness, being lightheaded. She even lost consciousness at times. Unfortunately, Macie, who was living with another caregiver at the time, didn’t receive the proper medical care.
This time was different. Darla immediately began searching for a doctor in Stephenville. She came across the name of Dr. Robert Mitchell, D.O., a newcomer to the area who practices at Stephenville Medical Surgical Clinic.
Dr. Mitchell was familiar with PH. The disease, for which a single medication existed in 1999, is now more widely studied and more quickly diagnosed. It’s serious, but manageable. Time is critical to a PH patient’s care.
It all happened in a whirlwind. Classes at Tarleton started August 22. Macie was diagnosed August 25. As quickly as her new life was falling into place, it threatened to unravel.
Macie had no chance to get to know her instructors, residential advisors or her classmates. She was enrolled in 16 semester hours. She missed some classes the first week and stayed in the hospital through the second.
After hearing about Macie’s family history and reviewing her symptoms, Dr. Mitchell suspected she too had the disease. He ordered an echocardiogram which was performed five days later. He also referred Macie’s case to a cardiologist, Dr. Brandie Williams.
Dr. Williams’ quickly sent Macie to see Dr. Sonja Bartolome in Dallas. She endured two long days of testing to determine the severity of her PH. A teams of medical professionals at UT Southwestern Medical Center determined it was very severe.
“Macie was at one of the nation’s top hospitals,” Darla said. “The physicians and medical team at UT Southwestern are very knowledgeable about PH and treatment of the disease.”
She knew the cause of her symptoms. But, her future wasn’t made as certain. When Macie questioned her specialist about her life expectancy, doctors told her that whether people are sick or not, none of them know if they will live to see tomorrow.
Darla said not being given a prognosis, a life expectancy, is a good thing. It simply means that anything is possible.
The disease has left Macie’s heart enlarged. The only cure for the disease is a heart and/or lung transplant, something Darla said medical professionals won’t consider in such a young patient. But, in a world of medical research and progress, tomorrow could bring greater advancements.
In the meantime, Macie’s treatment includes a daily dose of multiple medications, one which is an intravenous infusion that continually pumps through her body with the aid of a catheter inserted into her heart. The medicine has to be mixed and changed every 24 hours. It is now a crucial part of her daily life.
While Dana and her daughter’s stories are very much the same, Macie’s is unique.
“Dana never had the opportunity to seek treatment for – or be diagnosed with – PH,” Darla said. “Macie was diagnosed immediately and began treatment within a few short days. Macie is receiving the best care from the best in the nation.”
The doctors told Macie she should forgo her studies for at least a semester. Macie had another plan. She cut down her course load and told Darla she was going to remain enrolled. She was going to continue living on campus and focus on the future. Macie plans to become a special education teacher.
Darla admits the idea of Macie being away from home is scary. But, she said as soon as Macie made the decision, a team of professionals at Tarleton came together and formed an action plan. The plan includes officials across the university campus, as well as the city’s first responders – just in case Macie experiences a medical emergency in Stephenville.
“She’s doing really well and is so grateful to be ‘home,’” Darla said. “Home is where you find peace and Macie’s peace is Tarleton State University.”
And, Darla has found some peace of her own, knowing Macie is in good hands.
“They all know what to do; what not to do; who to call; where to take her; and we all have each other’s contact numbers,” Darla said.
Meanwhile, Tarleton found a dorm so that Macie and her high school friend Rachel Smithson could be roommates. Rachel is a fellow Tarleton student and has undergone training to learn about mixing Macie’s medication and operating her IV pump.
“We all learned the ins and outs of what saves Macie’s life,” Darla said. “This school, these staff members, actually a lot of the town, have taken Macie in as if she were their own. It’s truly the most amazing thing I’ve ever witnessed.”
Before Darla left Stephenville, she was a part of a roundtable discussion, with at least 12 Tarleton staff members. They outlined action plan and offered reassurances.
“Thank you does not even seem adequate, but please know that you are making a huge impact on the girl who told her doctor that dropping out of school just was not an option,” Darla said, providing a long list of names that included professors, residential coordinators, emergency personnel, police and fire officials, deans and many others.
“Every single one of these folks have made Macie completely understand what it means to hear the words, ‘Tarleton is family,'” Darla said. “We all bleed purple.”
How you can help
To show support to Macie, her older sister, Madyson Cox and some friends have organized a t-shirt fundraiser, selling t-shirts with the words “Macie Will Win” imprinted over the top of the PH awareness ribbon that is a periwinkle color, on the front. Orders will be accepted through this Friday, October 7.
For a $30.00 tax deductible donation, sponsors can have their names printed on the back of the shirts and shirts are being sold for $15 each for sizes youth small through adult extra-large. Sizes 2XL and larger are $17 each.
Order and sponsorship requests can be emailed to mad_2507@hotmail.com or darla.duty1967@gmail.com.
Financial contributions to assist Macie with expenses not covered by financial aid or medical insurance, including out-of-pocket medical copays, cost of traveling to and from appointments and day-to-day expenses can be made to Macie Paige at First National Bank Albany/Breckenridge. For more information, call the bank at at 254-559-2222.
Individuals who would like to submit donations online may do so through Macie’s PH Battle GoFundMe account.
You can follow Macie’s journey on Facebook, where there will also be information on future fundraisers.
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