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Hospice is not for the last few days of life. Click Here to Read
BY – SALLY FRIEDMAN (link)
There were days less than a year ago when just a gentle touch on her skin would cause Deadra Gladden terrible pain. Back then, she was in a hospital bed unable to move. Life was unbearable.
At 27, she was living in a prison known as lupus, a disease that many dismiss as a skin problem that makes it important to avoid the sun.
Deadra knows better.
Her chronicle of dealing with a debilitating disease is at once sobering — and hopeful — as this young woman explained on a recent afternoon at her Burlington City apartment.
While she told the tale sitting in a wheelchair while surrounded by her parents, brother and nephew, today she is living independently, with a little help from her family, and seeing some light at the end of a very long tunnel.
“It all started when I was about 14. I was healthy and very involved in sports, especially track. But suddenly, I found that I just couldn’t keep up. My parents also noticed a change in my stamina.”
Listless and sleeping a lot, Deadra also began feeling anxious about what was happening to her, and had occasional anxiety attacks in school.
“I knew something was changing, but I just didn’t know what — or why,” she said of those difficult times.
What she was feeling wasn’t just tired. It was a debilitating exhaustion.
By her senior year of high school she couldn’t continue as a full-time, on-site student, and by then, the diagnosis of lupus had been made. The telltale butterfly-shaped rash had showed up on her cheeks. That rash is a classic symptom of the kind of severe lupus that this formerly healthy young woman had.
Sadly, lupus already was rampant in the Gladden family of three daughters and one son. The oldest daughter, Danielle, died from the disease two years ago, despite a kidney transplant from her mom.
A middle sister also has the disease, but it is in remission. A brother, Darryl Junior, is so far free of lupus, and so are both parents, Darryl Gladden and Andréa Gladden of Burlington City.
Systemic lupus, officially known as systemic lupus erythematosus, can attack and affect any organ in the body, causing a wide range of symptoms.
In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs. The immune system then turns on the body, causing inflammation, pain, and damage throughout the system from skin, nails and hair to major organs.
Darryl Gladden holds hands with his Deadra Gladden, 27, who has lupus. The Gladdens lost another daughter to the disease. (Photo: Chris LaChall/Courier-Post)
As the National Lupus Foundation of America’s lupus information website explains, it also is a disease of flares, during which the symptoms worsen and then improve. The alternations can be bewildering and discouraging.
Current research indicates that at least 1.5 million Americans have the disease, but conjecture is the number is actually much higher. More than 16,000 new cases are annually reported in the United States.
Lupus is more common in women than men, and women of color are two to three times more likely to have the disease.
As Deadra Gladden went in and out of hospitals, and lost all semblance of a normal teen and young adult life, she began to feel, as so many others do, that the medical system she dealt with was itself broken.
“I didn’t feel listened to,” said this lovely and serious young woman. “Sometimes, I didn’t even feel cared about. It was a terrible feeling.”
Medical complications came in terrifying waves. Deadra required a kidney transplant, the organ donated by her father, and rejected by her body. Her gall bladder had to be removed. And then she suffered a stroke as a result of her compromised body.
“I was at the point where I just couldn’t cope. My parents had to be my advocates even though I was an adult.”
Both mom and dad, Andrea and Darryl Gladden, and Deadra’s brother, Darryl Junior, agree their daughter/sister was so disabled by pain and a body at war with her that she was descending into helplessness and depression.
“I never saw anyone as brave as Deadra,” said her brother. “It really broke my heart.”
Her father, who is head coach of the the Philadelphia Spirit after a standout player career at LaSalle, says his daughter’s courage has deeply moved him.
And just when it seemed things couldn’t get any worse, Deadre was in ICU at Lourdes-Camden, having suffered a stroke. The family was told there was little they could do for Deadre.
“After that phone conversation, I was struck with a headache like nothing I’d ever experienced, and the next thing I knew, I had collapsed, and ended up in an ICU at a hospital in Trenton,” remembers Andrea.
It was later concluded that a blood pressure issuecaused the symptoms, and fortunately, Andrea recovered quickly and with no permanent damage.
‘Here I am, living on my own,’ says ” Deadra Gladden, who has lupus and is on Samaritan Hospice’s non-hospice palliative care. She lost one sister to lupus and another sister is in remission from the disease. (Photo: Chris LaChall/Courier-Post)
Deadra remembers that terrible time, too, and how she had just about given up hope. It was in May 2014.
That was when Samaritan Hospice’s Palliative Medical Partners Team visited her at Lourdes-Camden. Nurse Tracy Guinta, a member of that team, recalled a young adult woman so wracked with pain and so weak that her head had to be lifted from the pillow for her to communicate with the nurse.
She wasn’t eating. She was even refusing her medications.
Her plea was simple: “I just want to be a normal 28-year-old,” said the patient. “I’d like to have a life, see a movie.”
Guinta and her colleague, Dr. Steve Goldfine, explained palliative care could help alleviate her pain.
Palliative medicine looks at the symptoms that affect a patient’s quality of life, and maps out plans that offer medical, emotional and spiritual support.
“We are providing palliative medical care for Deadra’s ongoing chronic and complex medical conditions,” says Dr. Marianne Holler, a palliative medicine fellowship director through Rowan University School of Osteopathic Medicine. “Palliative medicine’s goal is to improve quality of life for patients living with chronic illnesses that create symptoms that need to be aggressively managed over time. Unlike hospice care, for which patients should have a prognosis of six months or less, palliative medicine can be beneficial for pain and symptoms at any point in a serious illness.
“It can help people going through chemotherapy’s nausea and fatigue, or those struggling to alleviate intractable pain,” says Holler, who turned to the specialty in recent years. Her earlier background was in social work, and this seemed a wonderful way to use her medical training and social work background, she said.
Dr. Holler saw Deadre was the perfect candidate.
“Doctors can be very fearful about using narcotics with this age group because of addiction concerns. But palliative medicine is committed to both the pain reduction – and the anxiety that pain causes.”
Holler and her team ask patients two key questions: What do you understand about what’s happening to your health? Based on that, what’s your goal?
For Deadra, who is going through dialysis and its after-effects three days a week, the answers were clear. She wanted relief from pain, to be treated like an adult, and yes, to get her life back.
And thankfully, that has happened.
“Here I am, living on my own,” said Deadre, looking around at her cozy apartment, surrounded by art she love.
All last year, her parents slept on her couch to provide the 24-hour care she needed. Now they visit frequently, but encourage their 28-year-old daughter’s spirit of can-do.
“My deep regret is that my oldest daughter, Danielle, could not have had the benefits of is approach,” said Andrea Gladden, whose husband joins her in that yearning. “We want to tell the world about it.”
With pain under control, Deadre is able to spend quality time with her late sister’s 6-year-old son, Danny. The two have a special bond, and the child is able to make his aunt not just smile, but also laugh.
“Life is much, much better,” says Deadre Gladden. “Now I feel like I have a voice — and a future.”
For more information
For complete information about Samaritan’s Palliative Medical Partners, please contact (896) 596-1600.
On March 12, 2015, Yasmeen S. Khaleel, Esq., of Capehart Scatchard, Swati M. Kothari, Esq., of Law Offices of Swati M. Kothari., and Dr. Asad Sadiq, DMD of Pleasant Valley Dentistry spoke to a group of Samaritan employees about Indian and Pakistani religious and cultural sensitivities.
Samaritan clinical and administrative staff learned the basics about Indian and Pakistani family system, languages, roles of men and women, healthcare in India, religions, cultural norms, and burial rituals in order to better serve our patients and their families.