Tami Ray was desperate. She was diagnosed in 2003 with dysautonomia — a mysterious and debilitating disorder of the autonomic nervous system, which regulates the function of organs like the heart and gastrointestinal (GI) tract. Over the years, she was seen by a dozen doctors and specialists. Her latest doctor had told her there was nothing more the practice could do to help her.
“My medical issues became too complex for the practice,” says Tami, 51.
The North Sewickley Township resident needed a primary care doctor who could help manage and guide her care. At the suggestion of a friend, she made an appointment at Northern Medical Associates-UPMC in Wexford with internist Abir Abla Senz, DO.
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Dysautonomia affects millions of people in the United States and tens of millions of people worldwide. It also affects more women than men. But patients are often labeled hypochondriacs because there’s a lack of knowledge about the disorder.
Tami — a self-described “chronic illness warrior” — was anxious when she went to her first appointment with Dr. Senz in 2012. She feared dying before her children graduated from high school. Her illness, which initially appeared as a heart issue and passing out, was affecting other organs, including her digestive system. Some doctors were stumped by her symptoms, and some speculated her problem was anxiety.
“I was afraid that a new doctor wouldn’t want to take on someone so complicated,” says Tami. “I needed someone who believed in me and was willing to work with me for the long haul.”
When Dr. Senz walked into the exam room, Tami felt instant relief. “I connected with her immediately. She was professional and attentive,” she says. “She was so reassuring. I felt so at ease.”
Quarterback Of Care
The autonomic nervous system (ANS) controls things like blood flow to different organs, heart rate, breathing, body temperature, and digestion. When someone has dysautonomia, that system is out of balance and doesn’t function normally.
Tami’s illness now affects almost every organ in her body. She has the postural orthostatic tachycardia syndrome (POTS) form of dysautonomia, a condition in which too little blood returns to the heart when she sits up or stands up. Her heart rate ranges from the 30s to the high 200s; her blood pressure can dip as low as 53/38 and often hovers around 80/40. She also experiences extreme fatigue and migraines.
“As her primary care doctor, I help manage her care,” says Dr. Senz. “She has many complex issues that are very challenging. But we work together along with her specialists to help her feel better.”
Having a primary care doctor is essential for Tami’s care, says Dr. Senz. She sees her on a monthly basis and follows up with emails and phone calls. She also helps to coordinate Tami’s care with specialists — including a dysautonomia specialist, neurologist, cardiologist, and gastroenterologist.
“She sees specialists for treatment of her migraines, POTS, and GI issues. I manage everything to make sure her whole body is working well,” says Dr. Senz. “I’m trying to take care of all of her, not just one issue.”
That supervision and collaboration has been key to her care, says Tami. She trusts the specialists Dr. Senz recommends and doesn’t make any decisions about her care without consulting her first.
“Her opinion matters most,” says Tami. “We meet once a month. She reads the reports, I tell her things, and together we work out a plan. If she tells me to do something, I do it. I trust her with my life.”
A Culture Of Caring
When Tami first met Dr. Senz, she was looking for someone who would listen to her.
“That’s exactly what I found,” she says. “Someone who believes in me, listens to me, and respects me. Someone willing to do extra research into my complex issues and who doesn’t mind a challenge.”
She’s been so pleased with the care she received that her husband and children, ages 20 and 22, now see Dr. Senz. Tami says the culture of caring extends to the whole practice — the receptionists, administrators, nurses, and doctors.
“The entire practice sets the standard of excellence in primary care. Their focus is on the quality of care and the patient relationship,” Tami says. “It’s the best practice I’ve ever had, and I’ve seen dozens of doctors over the years.”
Before the COVID-19 pandemic, Tami brought homemade haluski to the office as an expression of gratitude. This year, she made wind chimes and beaded bookmarks for everyone there.
“It’s my way of saying thank you for giving me a better quality of life. I’ve never given up because they’ve never given up on me,” says Tami. “I’m so thankful to all of them.”
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