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The intersection of medical neglect and good fortune

Loss of taste and smell. Low energy. Nausea and feeling weak. It was spring 2020 and Laurence Parker, an associate dean in the Honors College and then a faculty member in the Department of Educational Leadership & Policy in the College of Education, was growing increasingly convinced that what he had wasn’t the flu or a stomach bug, but COVID-19.

When teaching his courses began to require more energy than he could muster, Parker went to the University of Utah Sugar House Health Center for a COVID test. The test came back negative, but something definitely wasn’t right. So, Parker called his primary care doctor, who sent him to get some blood work. Two days later, she called back and her concern was clear: “I don’t know what is going on with your blood but get up to the ER. Now! I’ll be in touch.”

Parker didn’t know what to expect as he headed to University of Utah Hospital. In fact, he was about to experience a major health challenge and learn firsthand about a disease that has largely been neglected yet potentially affects millions of African Americans. For the first time, Parker shared his story publicly during Black History Month and at the U’s Day of Collective Action on Feb. 8.

Crisis upon crisis

At the emergency department, staff took one look at his blood lab results and immediately took him to the cardio intensive care unit. Parker still did not know what was ailing him, even as he was being prepped for a heart biopsy. During the procedure, doctors found a serious heart blockage. When Parker awoke, he found himself attached to a beltway of tubes, IVs and monitors.

The world was still in the clutch of COVID and visitors weren’t allowed at the hospital, so Parker had to hear the bad news alone from his heart specialist. Dr. Jose N. Nativi-Nicolau told Parker that he had transthyretin amyloid cardiomyopathy (ATTR-CM), also known as hereditary amyloidosis.

A deadly disease

Hereditary amyloidosis results when the liver produces faulty transthyretin proteins, which form clumps called fibrils. These clumps then build up in the heart and other organs, causing damage. It is common in about 3% to 5% of the potential gene pool in the African American population, especially those of Afro-Caribbean and West African descent.

Proteins begin to build when people with the disease are in their mid-40s and symptoms show up when they are in their mid-60s; however, because amyloidosis affects older people and, with the variety Parker had, African Americans, the disease has been little studied and remains unfamiliar to much of the medical community.

Amyloidosis had probably been building in Parker’s body for 15 to 20 years and with COVID shuttering his gym, the proteins had begun to rapidly accumulate. After looking at his chart, Nativi-Nicolau got to the point and gave Parker a choice: he could try to gut this out and live with a heart that would be increasingly damaged by this disease, making his life painful and cutting it short or he could opt for a heart transplant.

In Nativi-Nicolau’s view, based on past experience and Parker’s condition, the chances were in Parker’s favor for obtaining a heart transplant, having a successful surgery and living for another 15 years or longer.

By the time Parker had his biopsy, the damage to his heart was so severe one of the young medical residents in attendance during the procedure broke down. In fact, this is one of Parker’s favorite stories about his medical journey.

“One of the senior interns told me that a new intern flipped out when he saw my bad heart on the monitor as they conducted the examination,” Parker said. “He was convinced that I was going to die right there and, being new on the job, he wasn’t ready for it. The other medical staff calmed him down and he left the room. Later, when I heard this story from the senior intern, I asked him ‘Was my heart in that bad shape?’ He replied, ‘Most definitely yes. You were lucky to have even made it up here.’”

For the next two weeks, he taught classes from his hospital bed over Zoom using a faux background so his students wouldn’t know what was going on. It was physically, mentally and emotionally exhausting to teach and to keep the situation private, but it also provided a sense of normalcy while Parker battled a life-threatening, little-known medical condition during a worldwide COVID lockdown.

By the end of summer 2020, Parker was trying to return to his life, teaching courses and mentoring six graduate students despite his limited energy. Good days were almost normal. But on bad days he could barely do the most mundane daily activities. And he had some choices to make, tough choices.

A little good fortune and tough choices

Parker had the good fortune of having Nativi-Nicolau as a care provider; the doctor had become familiar with the disease in Panama before continuing his medical training at Stanford and the University of Utah. In Panama, Nativi-Nicolau had studied under a leading researcher in amyloidosis who understood its relationship to race and Nativi-Nicolau had been able to see the disease’s characteristics firsthand. Another bit of good fortune for Parker was that the University of Utah Hospital is among the limited number of facilities in the United States that handle amyloidosis from diagnosis to treatment or transplant.

But getting a transplant isn’t as easy as queuing up a Netflix selection. Before he could be placed on the transplant waiting list, Parker had to arrange to have support over the four- to five-month recovery period, including rides to and from the doctor. His good fortune—having an experienced doctor, a first-rate hospital facility and qualifying for and receiving a heart transplant—doesn’t diminish his dismay at the fact this disease is understudied and that race plays a part in that.

“I later found out through research on my own that transplant organ units and medical teams will usually prefer patients who are relatively healthy and do not face barriers and issues that compromise their health,” he said. “This usually leads to early sicknesses and deaths based on the research done on the effects of institutional and structural racism that have deleterious impacts on Black health.”

When he wasn’t occupied setting up his support system for the months post-heart transplant, Parker was busy teaching and mentoring his graduate students. But the clock was ticking. He met with his students to share the news about his health. It created a new timetable for everyone. If his graduate students wanted to graduate with him as their mentor, they had until August to finish, he told them.

Working nights and Saturdays, Parker and his graduate students were able to be graduation-ready by the end of August. He also had to make arrangements for his spring 2021 Honors 3425 class, drawing on his extensive network to enlist prominent scholars in his area of expertise—critical race studies—to help. His students didn’t know it at the time, but they were about to get a weekly master class that would make them the envy of their peers.

The transplant

On Feb. 13, 2021, Parker got an early Valentine’s Day present. Returning from a short morning walk, he was digging into his mound of laundry when the phone rang. He knew from the number a heart had become available and it was go-time for the transplant. He answered and begged for an hour, just enough time for at least one load of laundry so he’d have some clean clothes after the surgery.

While the clothes were washing, Parker called his network of family and friends to set in motion the care plan they’d made. Two hours after the phone call, he was at the hospital waiting to welcome a new heart. But first, there were tests. And there was waiting. And paperwork. And more tests. And more waiting. And more paperwork. And more tests. And more waiting. At 11:30 p.m., Parker was wheeled into surgery. He asked the surgeon if he wasn’t too tired to operate and was told, “No. We do this all the time. We are trained for it. What song do you want to hear as we go into surgery?” His choice? Stevie Wonder’s “Fun Day.”

Wonder’s high tenor voice singing, “This is fun day/Yours and my day/This is fun day, dee. . .” was the last thing Parker remembers before waking up with a big tube down his throat, reeling from chest pain and sick from waning anesthesia. Writing on a chalkboard, he asked a nurse for some water. The nurse said no. With newly lowered expectations, he scribbled out a request for an ice chip. The nurse said, “One ice chip, but only one.” She took out the tube and put one small ice chip on his lips. It was the sweetest, most refreshing drink of his life with a new heart on Feb. 14.

A new life with a new heart

Parker was released from the hospital two weeks later with an incredible 21 medications to be taken daily. He left with Kendrick Lamar’s “Alright” providing a soundtrack.

All circumstances considered, Parker said that’s exactly how he felt. “I wanted to hear this on the way leaving the hospital because I felt blessed and lucky that I was ‘alright’ and that while the journey to a recovery was going to be long, hard and unknown, I had faith that I was going to be ‘alright.’”

He went to a friend’s house, where he would stay for the next four months. The friend was astonished to see Parker walk into the house on his own; he expected Parker to be in a wheelchair, totally debilitated.

Laurence Parker six weeks after his heart transplant.

Parker set himself a new goal every day to gain back his health and independence. He started by walking to the nearest stop sign, a beeping heart monitoring as his walking partner. Then it was the next stop sign. And then the next and the next and the next, with his final goal being the patisserie down the street, Tulie Bakery, where he planned to reward himself with a croissant.

The first six months after a transplant are critical and Parker had to not only worry about his body rejecting the new heart but also COVID. The care team, in uncharted territory, would not allow him to get a vaccine until they were sure the transplant medication could be safely combined with the shots. Throughout the first part of the recovery, Parker received so much support from faculty and administrative colleagues, friends and current and former students. They brought over meals and books and were always checking in on him. His progress was moving in the right direction for the most part, doing cardiac physical therapy and all the other post-operation heart transplant tasks.

However, a major setback came in late September 2021. He was sick and couldn’t eat. Parker wasn’t surprised that his hard-won croissant reward had little taste in that early phase, but now he didn’t even have an appetite for the spicy Thai and Indian food that had cut through his earlier loss of smell and taste brought on by the multitude of medications he had to take. He was nauseous, weak and in pain. By the fall break, Parker was back in the hospital—this time with cytomegalovirus (CMV), introduced to his body through the donated heart. The CMV was attacking his heart and nervous system and multiplying quickly. He was given a regime of antibiotics and had to receive an IV every day for six weeks.

Coming full circle as a professor and patient

Parker had his last heart biopsy in November 2022. Prior to the procedure, he ran into Lachlan Zuchetto, a former University of Utah honor student, a young person he helped recruit to the U from East High School in Salt Lake City. His former student was now in medical school and Parker invited him to attend the biopsy. Other former students, also now in medical school—including one whom Parker had to talk out of quitting the Honors College in 2018—attended some of his medical screenings and procedures.

“One of the many beautiful experiences out of this heart transplant journey was seeing undergrad students such as Sri Radhakrishnan, Nestor Chavez, Gabriella Rasmussen and Sheva Mozarfari who I worked with at the Honors College and then went on to get into medical or nursing school,” Parker said. “It has been great to see them and keep in contact with them as they go on to serve as future nurses and doctors in our health care system.”

Today: A new heart. A new life. A new perspective.

Parker has a new heart, a new perspective and new duties.

“When I decided to take on being the chair of the Department of Educational Leadership & Policy in May 2021, just a few months after the transplant, everyone either thought I was crazy or they wanted me to take an extended medical leave and not come back till 2022,” he said. “But I knew that I could and would be able to handle it because I had great comrades and colleagues who were supportive and I would not get down or let myself get upset over things in this new role as chair. Besides, the running joke with some on the cardio team was that ‘Oh yeah, we told central administration that he can jump back into work without a problem—so you were set up to take on being chair.’”

It’s now 2023 and Parker is down to 14 medications a day and even back to the gym. Heart transplant patient and amyloidosis survivor might be part of his new identity, but so is a deep and profound sense of appreciation and gratitude.

“I am thankful and appreciate the small things in life. If I can get up, have coffee and go about a normal day, I feel really good no matter what,” he said. “This is because I have a lot of faith in the network of so many people. I met the challenge of this disease and the heart transplant because of these connections and relations.”

Advancing understanding

Laurence Parker during his recovery from a heart transplant.

Like most stories, there is another story embedded within Parker’s. His health journey went from a negative COVID test to a life-threatening diagnosis that took a very fortunate turn. That’s at least in part due to the fact that he works for and is a patient of the University of Utah Hospital, a facility able to handle amyloidosis from diagnosis to treatment or transplant.

Even though this particular type of amyloidosis affects a notable portion of the older African American population, it is only within the last 15 years it has received significant attention. This lack of research has led to gaps in medical knowledge, medical training, public health literacy and treatment options.

Parker saw the impact of this racialized medical neglect firsthand. The person assigned to do the genetic testing to confirm hereditary amyloidosis shared that she had to spend three to four days reading about the disease because she had never heard of it before. In addition, Nativi-Nicolau would bring his residents to Parker’s room regularly to ensure his medical students wouldn’t mistake future cases of amyloidosis for COVID or heart disease, as they were unlikely to receive this training elsewhere.

“It’s been a tough situation,” Parker said during his presentation on Feb. 8. “I think about all the relatives I may have had that I don’t know that may have had this and they didn’t know about this. And all the African Americans that may have it and not know about this.”

It doesn’t take much to imagine that if Parker worked for a different institution and had a different care team that his personal story would have had a very different ending—one that is far less happy and positive than the one he is lucky enough to share.