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The New Normal: Heart Transplant Follows HIV Diagnosis

Carl Klaxon is living life to the fullest after being the first HIV patient to receive a heart transplant in Illinois.

For most people, a heart attack is a big deal.

But not for 64-year-old Carl Klaxon*. He's suffered 17 heart attacks since he turned 39 – an average of one every 18 months.

The southern Indiana resident's problem is inherited; both of his parents suffered from artery-clogging plaque. His mother died from a heart attack in her early 40s, followed by his father in his early 50s.

But in 2000, his local cardiologist detected a new malady after Klaxon reported feeling particularly fatigued.

He had acquired HIV.

"This came as a surprise," he said. "A big one. It wasn't just early HIV. I had already skipped right through that part; I had full-blown AIDS."

Klaxon, who traced his infection back to "bad choices," was particularly ill. His white blood cell count, a measure of his immune system's ability to fight off an infection, was down to 1. Normal levels begin at 4,500.

A Step Forward, Then Back

Decades ago, an AIDS diagnosis was a death sentence. But newer anti-retroviral regimens introduced in 1996 enabled Klaxon's physicians to get the virus under control. His white count bounced back and the amount of virus in his blood plummeted to "undetectable" levels.

Thanks to those groundbreaking therapies, the average life expectancy for people with HIV has increased to more than 30 years following a diagnosis.

"Very few people get a second chance in life, this is my second, second chance."

With the help of as many as 30 pills a day to manage his HIV and heart problems, Klaxon's HIV remained in check, but his heart was continued to deteriorate.

"We hit a point where my local doctors could no longer offer much, so they referred me to colleagues at a nearby hospital," he said. The cardiologists at the second facility told him there was nothing they could do.

No matter how well it was controlled, his HIV, they told him, made him ineligible for a heart transplant.

Klaxon wasn't about to give up. After decades of managing his ailments, he'd become well-versed in looking for alternate treatment approaches. He asked about receiving a left-ventricular assist device (LVAD), a high-tech implanted system that helps the heart pump blood.

Doctors referred him to the University of Chicago Medicine, home to the region's leading heart transplant and LVAD programs.

"So, in early July, they put me on a helicopter and flew me to the University," he said. "By the way, that's an expensive ride."

By that time, Klaxon had developed advanced ischemic cardiomyopathy. His enlarged left ventricle was weak and couldn't pump enough blood. He was suffering from shortness of breath, chest pain and extreme fatigue.

By that time, Klaxon had developed advanced ischemic cardiomyopathy. His enlarged left ventricle was weak and couldn't pump enough blood. He was suffering from shortness of breath, chest pain and extreme fatigue.

At UChicago Medicine, Klaxon met with heart failure specialist Nir Uriel, MD, who had been recruited from Columbia University in New York, where he built the nation's leading heart transplant program for HIV-positive patients.

"He came to us in cardiogenic shock," Uriel explained. "He required an immediate intervention. We introduced an aortic balloon pump, a temporary measure, to buy time. Then we began to prepare him for a heart transplant. That was his best option."

Klaxon passed a series of diagnostic tests. Around Labor Day 2015 he was added to the heart transplant waiting list, becoming what doctors believe is the first HIV-positive heart transplant candidate ever to be listed in the state of Illinois.

He received "a good strong heart" weeks later, just in time for him to turn 64.

"This was a much better birthday present than a new pair of khakis," he joked.

Four weeks later he was out of the hospital and recovering at home.

Few Transplant Options

Organ transplantation for HIV positive patients has long presented a quandary for doctors, who must carefully manage a delicate balance of medications. Patients need to take drugs to suppress their immune system in order to prevent rejection of their transplanted organ. But they also need medications designed to boost their immune system to control their HIV.

"There was a learning curve," Uriel said. "But over time we learned this was not as difficult as we feared." And, as it turned out, some rejection-blocking drugs actually help control the virus.

Still, HIV positive transplants continue to challenge clinicians and researchers. Even something as basic as eating can become an issue due to overlapping dietary restrictions for HIV patients and heart transplant recipients. (Transplant patients, for example, are told to avoid certain vegetables, lettuce, fruits such as raspberries that are hard to wash and can cause food-borne infections, and grapefruit, which delays the breakdown of medications to prevent rejection.)

Heart failure affects 5.7 million Americans, and more than 1 million people in the US are HIV positive. Based on those figures, Uriel estimates about 20 HIV positive patients need a heart transplant or LVAD each year.

But probably fewer than 10 transplant centers in the United States have ever performed a heart transplant for an HIV positive patient, experts said. According to a 2014 survey that was published by Uriel and his colleagues, 51 of the 89 heart transplant centers in the US consider an HIV a contraindication; they won't perform the operation, even though survival rates for transplanted HIV positive patients are no worse than those with the virus.

"Thanks from the heart, and for the heart. Believe me; I'll take good care of it."

That's likely because heart transplantation by itself is a complex procedure, Uriel points out, and HIV adds another layer of potential complications. In an excess of caution, it may explain why so few facilities perform them on HIV-positive patients.

"A lot of centers insist they are willing, yet they have never done a case and have no patients on the waiting list," Uriel said. "But this is slowly becoming accepted and, I hope, will eventually be something we do all the time."

In January 2016, the International Society for Heart Lung Transplantation noted "most centers still tend to shun HIV patients." But for the first time, the group also recommended that HIV-positive candidates be considered for heart transplantation if they meet certain criteria, including undetectable HIV levels.

Uriel hopes that's a sign more transplant centers may eventually perform the procedures.

"When you help someone who didn't have a chance before, it is a good feeling," he said. "I'm proud that with Mr. Klaxon, the University of Chicago is now on that short list."

A 'Second, Second Chance'

Before the transplant, Klaxon's weak heart forced him to retire. He tried to relax. He bought new fishing gear. But it became clear that work, not fishing, was his real hobby.

"I've worked since I was 12 years old," he said. "Work was my fun. It's not about the money; I'm just driven. I need to be doing something." So the fishing poles, price tags still dangling, now gather dust in his closet.

He would like to work in patient education, using his story to inform students, agencies, minority groups, and even physicians about treatment options and organ donation.

"A few months ago I was ready to go home and just expire," he said. "I would never have considered the possibility of a heart transplant if I hadn't been air-lifted to the University of Chicago. For the first time in decades, I have reason to think I'll get to see my grandkids graduate."

For his part, Klaxon appreciates how fortunate he was.

"Very few people get a second chance in life," he said. "This is my second, second chance."

And he remains grateful to the donor whose organ helped give him a new lease on life.

"I wish I could let my organ donor, or at least his family, know how grateful I am," Klaxon added. "His lack of selfishness is an act of—I don't know how else to say it—godliness. So thank you, sir. Thanks from the heart, and for the heart. Thanks for the opportunity. Believe me; I'll take good care of it."

*This patient's name and certain personal details have been changed at his request.

February 2016

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