A rare diagnosis a stent lost in the mail

“There was no way it would get to me in time,” Acardo said.

The 46-year-old New Orleans resident was waiting to have his stent delivered to him in Houston.

once he landed, he would undergo a revolutionary surgery, performed by only 10 surgeons in the us. uu. — including oderich.

And if that wasn’t enough, Acardo was in town early with his partner Ken Daigle. They wanted to outrun Hurricane Ida, which was headed for Louisiana just before its August. 31 operation. after a decades-long medical journey, the light at the end of the tunnel began to seem unattainable.

That is, until manufacturing company cook medical took on the role of fairy godmother and literally fired up the jet engine.

oderich called with the news, “the stent is on the way.”

looking for an answer

The story began in the year 2000 with a menstrual cycle that did not stop.

accardo was on birth control and had breakthrough bleeding.

“I kept thinking I had to stop,” she recalled.

When it didn’t, acardo became so weak that her father had to carry her to the car and rush her to the ER.

“I was tested for every bleeding disorder there is,” she added.

newlywed, a fertility specialist warned her about the dangers of pregnancy: “When you get pregnant, the arteries in your uterus open up to the size of garden hoses. you could bleed to death.”

Meanwhile, Acardo continued to make regular trips to the hospital to stop the bleeding.

“I was exhausted,” she recalled. “It was like three years of hell.”

in 2003, doctors performed a partial hysterectomy.

but, the removed section of her uterus came back from pathology with no abnormalities, nothing that could have caused, or explained, the bleeding.

The next step was to check his aorta. again, the results were normal.

accardo still had no answers. but the bleeding mysteriously stopped.

“I got on with my life,” Acardo said.

It would be another five years before I was back in the ER.

back at the hospital

acardo’s husband, a police officer, died in hurricane katrina. his house was ruined by the storm, completely under water. After disemboweling him, Acardo sold the property and tried to rebuild his life.

In 2008, he found solace in the gym. she enjoyed his new job and even started dating again.

One night at dinner, an intense pain grew in his jaw.

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“From that moment on, I felt as if someone had stuck a knife in my chest,” he said. “I looked at my boyfriend and said, ‘I’m having a heart attack’.”

He assured him that he was too young at only 33 years old.

“I was sweating profusely and shaking,” Acardo said. “I went to the bathroom and when I came back to the table, I was pale.”

He went straight to the emergency room.

“They took me back right away and did all kinds of tests,” Acardo said. “Everything was getting back to normal, but I was doubled over in pain.”

Finally, the cause was discovered: an aortic dissection, a tear in the main artery that is usually fatal.

Acardo’s mind immediately turned to actor John Ritter, who died of aortic dissection.

“I just got lost,” he said. “I’ve never heard of anyone living with that.”

The cardiovascular surgeon on call that day in new orleans told him that if he performed the surgery there, he had only a 50 percent chance of survival.

“But if I take you to Houston, you have a 95 percent chance,” he explained.

Accardo was transported by jet.

“I was on an operating table at 8am. m. the next morning,” she said.

a diagnosis

That was his first open heart surgery, performed by dr. Anthony Estrera, Vascular Surgeon at McGovern School of Medicine at UTHealth Houston and UT Physicians and Assistant Surgeon with Memorial Hermann.

accardo also connected with dr. dianna milewicz, director of the division of medical genetics at the mcgovern school of medicine at uthealth houston.

“I think it’s loeys-dietz,” said milewicz. loeys-dietz syndrome is a genetic condition of the connective tissue that causes enlargement of the aorta. first identified in 2005, it was still unknown when accardo became a regular customer of the hospital.

after confirmation of a blood test, accardo finally had an answer.

“I had my diagnosis,” he said. “I knew my life was going to be very different from now on.”

After the diagnosis, Acardo lost count of the surgeries. he mentions a second open heart surgery and a subclavian artery repair, among others.

in 2021, he told estrera, “something is not right. I just know something is wrong.”

He told her about Oderich, who is world-renowned for innovative and minimally invasive endovascular techniques.

The aorta is the largest blood vessel, it arches up from the heart to the lower neck, then down through the center of the body, and then divides at the legs. Normally, the aorta is about a quarter wide, Oderich explained.

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When the size increases or dilates, an aneurysm forms, causing a weakness in the blood vessel and a risk of rupture. tearing, known as aortic dissection, is also possible.

Patients with genetic diseases, such as Loeys-Dietz, are predisposed to aneurysms and dissections, Oderich explained.

Traditionally, most aneurysms and dissections involving the aorta were treated by conventional open surgery. the operations required a large incision and the assistance of a heart-lung machine. A less invasive alternative is endovascular repair, which uses special stents that are placed inside the artery through a small incision in the groin.

Innovative technology uses stents constructed with separate lateral arms, “branches,” or fabric openings, “fenestrations.” this allows separate parts of the stent to be added to continue the blood supply to the organs.

“these aneurysms are not easy to repair and require a lot of planning,” oderich said. He explained that this technique avoids the need for a large incision, as well as the interruption of blood flow, that accompanies open surgery.

oderich said some patients can be treated with a commercial stent, but many need stents specific to their unique anatomy.

“we can accurately measure the distances between the ships and their exact location,” he added. “Then we ask the engineers for a specific shape and length, with branches in the places we want.”

The operation is performed in hybrid rooms that allow obtaining x-ray images in the middle of an operation.

“We place the stents exactly where we want them in the aorta,” said oderich, who began working with fenestrated stents in 2007 at the cleveland clinic. he compares putting everything together to building a ship in a bottle.

however, most fenestrated and branched stents are not yet commercially available in the us. Although they are widely used in other parts of the world.

only a few centers in the country have research protocols approved by the food and drug administration to access the technology.

oderich is included in the list. His ongoing research offers these special stents, and he moved to Houston last year after working at the Mayo Clinic.

for acardo, it arrived just in time.

the next chapter

“His anatomy was already so distorted” from previous surgeries, Oderich said.

With two arteries feeding his left kidney, instead of the usual one, acardo was an ideal candidate for a branching, fenestrated stent.

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the procedure was finally carried out on sept. 5, just after the kitchen plane landed.

“The operation took about two or three hours,” oderich said. “Immediately after that, she woke up.”

Because it was a minimally invasive surgery, Acardo recovered quickly.

“I was in the hospital for four days instead of six weeks,” he said. “the technology dr. oderich has is a game changer.”

oderich saw accardo for a checkup two months after the operation.

He is required to follow each of his research patients for five years for the FDA, but continues to monitor their progress long after. She has performed more than 700 total fenestrated stent implantations, including 60 since she moved to Houston.

“i fell in love with houston because of its history of cardiovascular surgery,” oderich said. “I want to help write the next chapter.”

a silver lining

accardo is never sure what the future holds.

“Will this be my last surgery? I had no idea,” she said. “But I’m hopeful.”

accardo relies on faith, family and friends to navigate uncertainty. however, what helped the most was something completely unexpected, accardo explained.

Because of her genetic diagnosis, she reconnected with a boy she gave up for adoption at age 19.

At first, she kept in touch with the adoptive family, but lost contact when her daughter, Mary Ellen, was 3 years old.

loeys-dietz gave him a reason to try again.

“I had to find her,” Acardo said.

mary ellen was examined at age 14.

“My daughter tested negative,” Acardo said. “No one else in my family has it. he started and stopped with me. when they gave me the news she was negative, it was the best day.”

the two began to write letters. When Mary Ellen turned 18, she began to communicate with her mother on her account.

At age 19, Mary Ellen met Acardo in person for the first time.

“I wouldn’t necessarily have the relationship I have with my daughter if I didn’t have this diagnosis,” Acardo said.

“I would go through all that again just to have this connection with her,” he added. “That’s what gets me through, especially her.”

And that abiding love gives their Cinderella story a fairy tale ending.

lindsay peyton is a freelance writer living in houston.

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