A family partnership leads to better health for a vascular interventional radiology patient

The extended family of vascular interventional radiology patient Millie Hughes accompanies her to appointments for support.

A family partnership leads to better health for a vascular interventional radiology patient click to enlarge UNC patient Millie Hughes awaits treatment for her vascular malformation. Her family accompanies her to every visit.
A family partnership leads to better health for a vascular interventional radiology patient click to enlarge Dr. Joseph Stavas

Four years ago, Millie Hughes of Asheboro was recovering from treatment from bilateral breast cancer and a deep vein thrombosis (DVT) when she knew something else was wrong.  She told her oncologist that she was feeling something that felt very similar to her previous DVT, but when the oncologist ran some tests, the diagnosis surprised Hughes.

“My oncologist looked at me and said, ‘Millie, I can’t tell you what it is.  This is something beyond my specialty,’ explains Hughes.  “That was a surprise and worried me a bit.”

She was sent to a physician in High Point, who ran “every test under the sun.” Multiple ultrasounds, blood work, and x-rays led to another surprising discovery .

Hughes was diagnosed with a vascular malformation.  Vascular malformations are abnormalities of the blood vessels: veins, arteries, lymphatics, or some combination. Most are benign conditions present at birth, but some may progress to create problems later in life.

Specifically, an arterio-venous malformation (AVM) was discovered in Hughes’ deep pelvis.  Arterio-venous malformations are large, abnormal connections between arteries and veins. AVMs cause pain, blood clots, heaviness, skin breakdown, overgrowth of tissue, and even congestive heart failure.

“During my cancer treatment, no one had diagnosed this, so I was shocked,” explains Hughes.  “The doctor in High Point told me, ‘It’s a mess.  I can’t treat you.  If you don’t mind, I’m sending you to Chapel Hill for a second opinion.’”

Hughes was immediately seen at UNC Hospitals by vascular interventional radiologist, Joseph Stavas, MD, of the UNC Center for Heart and Vascular Care.  Dr. Stavas is also one of the founding clinicians in the UNC Hemangioma & Vascular Malformations Clinic, a multidisciplinary endeavor to treat patients with vascular malformations.

The UNC Hemangioma and Vascular Malformations Clinic is unique in that it’s the only clinic in the Southeast to bring together specialists from 14 medical departments—both pediatric and adult—on a regular basis to meet and discuss treatment options for patients with vascular malformations. All of the physicians are located on the UNC Health Care campus in Chapel Hill, allowing for a seamless referral from one specialist to another.

When Hughes arrived for her first appointment with Dr. Stavas, her husband, Eddie, was by her side.  Dr. Stavas was in for a surprise, though, when he saw the rest of the “entourage” that accompanied her.

“My brother, his wife and daughter, my sister and her husband, my two daughters, my son-in-law, and don’t forget my unborn baby granddaughter,” laughs Hughes.

Siblings - Millie Hughesdaughter and granddaughter - Millie HughesLeigh - Millie Hughesgroup shot - millie hughes

From left to right. Photo 1: Millie Hughes (right) with sister Judy and brother Kenneth. Photo 2: (From left) Millie Hughes’ younger daughter Jennifer, with husband, Kenny, and daughter, Kenadie. Photo 3: Millie Hughes’ older daughter Leigh with baby granddaughter, Kenadie. Photo 4: (From left) Millie Hughes’ sister Judy, her husband, Ray, holds Kenadie, Millie, and Millie’s husband, Eddie.  Photos courtesy of Millie Hughes.

“Dr. Stavas was so nice about it,” says Hughes.  “Before every treatment, he explains to my family what he is going to and the outcome he hopes to see.  They pray together while I’m being prepped, and my family shares our life stories with him.”

“We are just a silly family, and bless his heart, Dr. Stavas tries to bring humor into everything to make my family feel better,” declares Hughes.

Arterio-venous malformations can sometimes be shut down by catheter embolization and surgery.  Dr. Stavas has been treating Hughes in the VIR lab with miniscule catheters and wires that are guided deep into the center of the malformation and then shut down with complex embolization devices.

In Millie’s situation, the malformation was so large that it created almost a straight-away connection from her pelvic artery to the inferior vena cava, which led to extremely high pressures in her heart. The added blood burden then caused breathing and heart function problems. If the malformation was not closed off or slowed, she would suffer from permanent lung and cardiac damage.

While Hughes saw good progress towards pain relief and comfort early in her treatments, she is still continuing treatment with Dr. Stavas every six to eight months.  “He explained that my malformation won’t ever be completely gone, and I’ve probably had it since birth, but he has been wonderful.”

The Hughes family is also appreciative of the care their beloved Millie has received at UNC.  After Hughes’ very first procedure in VIR, she wanted to go home immediately.  Dr. Stavas recommended that she stay overnight.  “My family sided with him,” Hughes exclaims, “especially my sister, who was very adamant that I should listen to Dr. Stavas.  But when have I ever listened to my big sister?” she laughs.

After a non-life threatening allergic reaction at home that evening after the procedure, Hughes now knows to listen to her physicians and her family. “Don’t worry, I’ll stay from now on,” she concedes with a small smile.

Speaking to the importance of teamwork at UNC, as well as in a patient’s home environment, Dr. Stavas adds, “We have worked hard to develop a comprehensive model of care for people with malformations including the latest technical and medical wonders. Equally important is the heartfelt involvement of family and friends who often travel from far away, easing anxiety and fear.  Our UNC team listens, counsels, empathizes, and acts. And it’s succeeded!”

To make an appointment in the UNC Hemangioma and Vascular Malformations Clinic, call the Open Access Referral Center at 866-862-4327.