Uncovering and Treating an Underlying Cause of High Blood Pressure

Hypertension is a very common condition that can have serious health consequences if it isn’t properly managed. So, when Tracey Punzone was diagnosed with high blood pressure in her mid-thirties, she heeded her physician’s advice and reluctantly began taking medication.

The medication did its job, but her condition was more complicated than anyone realized. “As I got older, my blood pressure kept going up, and they just would increase the dosage,” she says. She was frustrated because she was at a healthy weight, ate well, lived an active lifestyle and was so young. But her doctor wasn’t taking a closer look.

The cause of her resistant hypertension came to light only after intense pain sent her to the emergency room in Sarasota, where she lives. A lot of digging, doctor visits, and diagnostic tests finally revealed her condition: fibromuscular dysplasia, also known as FMD.

That’s also what led her to interventional radiologist Barry T. Katzen, M.D., the founder and chief medical executive at Baptist Health Miami Cardiac & Vascular Institute, where she was treated. The Institute is one of only 19 locations on a national registry of treatment centers for FMD, providing answers — and a treatment plan — that no one else had offered.

(Watch now: Hear from patient Tracey Punzone and Barry T. Katzen, M.D., the founder and chief medical executive at Baptist Health Miami Cardiac & Vascular Institute.)

Now, not only is Ms. Punzone’s blood pressure under control, she feels better than she has in years. “My life today is wonderful,” she says. “I’m three months without blood pressure medication that I took for 15 years — 15 years! I am very active and I’m thrilled about not being on medicine.”

What Is Fibromuscular Dysplasia?

Fibromuscular dysplasia is a vascular disease that affects mostly women, although it can affect children as well. The cause is unknown.

The condition involves the abnormal development of cells in the walls of arteries, causing the vessels to narrow and bulge. A characteristic “string of beads” pattern, attributable to the alternating narrowing and enlarging of the artery, can block or reduce blood flow, resulting in elevated blood pressure.

Barry T. Katzen, M.D., founder and chief medical executive of Baptist Health Miami Cardiac & Vascular Institute.

Ms. Punzone’s condition was not initially detected although she reported many health challenges: resistant hypertension, chronic headaches, ringing in her ears, fatigue and dizziness.

When she sought emergency care because of extreme pain in her flank, she says doctors at the Sarasota hospital did not mention her FMD. They did detect an aneurysm that was causing bulging in her renal artery, but she says she was uncomfortable with their treatment plan for that condition when they advised it could compromise her kidney function.

After a 10-day hospital stay, Ms. Punzone, 51, went home, uncertain of what to do next. She consulted a vascular specialist, which led to a breakthrough.

“He walked in the room after reviewing all my scans and he said, ‘Did anyone ever tell you that you have FMD?’” she recalls. “That's how I was diagnosed.”

Seeking Expert Care

The confusing road to a full diagnosis made things more difficult for Ms. Punzone. “I was terrified,” she says. “I thought I was a ticking time bomb and that at any moment I could just die.”

Since information is power, she decided to learn as much as possible about her condition and treatment options.

“My family and I just went to work. We searched everything we could find on the internet, talked to everybody,” she says. She even consulted a specialist in Ohio, but decided that was too far from home for treatment.

A staff member at the Fibromuscular Dysplasia Society of America offered to introduce her to a patient who was treated successfully in South Florida. Hungry for more information, Ms. Punzone was eager to connect. “She shared her story, and then she said, ‘My doctor is Dr. Katzen and he's wonderful. You should contact him.’”

Afraid to get her hopes up, Ms. Punzone sent Dr. Katzen an email. She was thrilled when he responded promptly. They soon met by video call. She says his kind, reassuring manner and willingness to listen immediately put her at ease.

Addressing the Problem

As one of 19 centers on the FMD national registry and the only one in Florida, Baptist Health Miami Cardiac & Vascular Institute had the expertise to assist Ms. Punzone.

“Patients with fibromuscular dysplasia require a multidisciplinary approach involving multiple types of vascular specialists, working hand-in-hand to ensure the best outcomes for patients,” says Ian Del Conde Pozzi, M.D., who leads the Institute’s vascular medicine program and hypertension clinic. “At Miami Cardiac & Vascular Institute, we have all the different vascular disciplines and an interest in fibromuscular dysplasia that translates into great care for patients.”

In Ms. Punzone’s case, it was clear that intervention was needed — and soon. Her blood pressure was out of control and had gotten so high that she risked a stroke.

“When Tracy and I first met, she was highly frustrated and had been going through a difficult year trying to sort out her various medical problems,” Dr. Katzen says. Her condition was complicated by the aneurysm, and she was offered conflicting advice and “pretty extreme treatment alternatives,” he says.

At Dr. Katzen’s suggestion, Ms. Punzone agreed to angioplasty, a minimally invasive procedure in which a balloon-tipped catheter is threaded through the vascular system from an artery in the leg to the problem area, then deployed to open up and restore blood flow.

“We use balloon angioplasty for FMD to disrupt those webs and the irregularities in the vessel. Once they’re disrupted, the artery has the capability of actually healing itself,” Dr. Katzen explains.

Dr. Katzen noted that Ms. Punzone’s case was complex. FMD can produce all types of confounding symptoms — or no symptoms at all. But that’s all the more reason to seek experienced care.

“At Miami Cardiac & Vascular Institute, we’ve had a 30-plus-year history of being involved in treatment of these patients,” he says. “I think it’s a really great asset for patients here in Florida and in the region to be able to have physicians who are comfortable treating this condition.”

Lessons Learned

Traveling across Florida for expert care was definitely worthwhile, says Ms. Punzone, a busy real estate agent, wife and mom to three children and two dogs.

After the procedure, she woke up in the middle of the night at Baptist Hospital and was shocked at what a difference the angioplasty made.

“I felt amazing. I felt alive. I felt like I haven’t felt in years,” she says. “I didn’t realize how sick I was. I was sick for a long time. That procedure helped me tremendously.”

Good follow-up care is important, Dr. Del Conde notes, especially since many patients with FMD experience aneurysms, which are weak places in their arteries that can rupture.

“It is important that all patients with FMD be screened from head to pelvis to establish whether they have any aneurysms that require treatment,” Dr. Del Conde says. “At Miami Cardiac & Vascular Institute, we have highly skilled vascular interventionalists with ample experience in the treatment of all types of aneurysms, including those in the brain as well as the arteries in the abdomen.”

Having resumed an active life, Ms. Punzone plans another procedure to address her renal aneurysm, she says. Most important, she says she now realizes how critical it is to find a physician you can communicate with well.

“I wasn’t getting the right care and no one was listening to me regarding my health and all of my symptoms,” she says. “They just wanted to give me more medicine… I knew something was wrong.”

Ms. Punzone fights back tears when she expresses her appreciation for Miami Cardiac & Vascular Institute and Dr. Katzen: “He listened, and he knew. He found out what was wrong and how to help me.”