CHICAGO – Just three weeks before getting married, Annesley Clark (they/them/theirs) had to cancel their wedding. The 33-year-old from Chicago, Ill., had a life-threatening infection and a mass growing on their heart. Clark needed open-heart surgery right away.  

Because of the infection, the risks from surgery increased significantly and their outcome was uncertain. Clark and their partner, Christine Corso (they/them/theirs), were determined to say their vows before it was too late. 

The nursing staff at Northwestern Memorial Hospital had formed a special bond with the couple and despite not having much time, they pulled together a wedding in less than 24 hours.   

“Annesley is one of the most positive people I have ever met and constantly uplifts others,” said Tien Mai, a clinical nurse on 11W Feinberg at Northwestern Memorial. “They asked if it was possible to have a wedding the next day before surgery, and the moment I heard that, I made all the calls necessary. From blowing up balloons at the nurses' station to safely preparing them to walk down the aisle, my whole team made all the details perfect. Seeing Annesley smile as they walked down the aisle was the best feeling.” 

On October 9, one day before heart surgery, the nurses transformed the hospital waiting room into a wedding venue with balloons, decorations, flowers, and a makeshift altar. Clark’s close family, friends, and dozens of hospital staff gathered to celebrate their big day. 

“I am so grateful for the care that I’ve received from these doctors and nurses,” said Clark. “I have spent more than a third of the past 15 months at Northwestern Memorial Hospital. Many of the nurses at our hospital wedding were invited to our planned wedding in November. We’ve built such a great relationship with these people, and I have come to feel so cared for and seen by them. They’ve seen me in times that are really rough and scary, and I’m so glad they got to witness the enormity of the joy today.” 

A race against the clock 

The wedding allowed Clark and Corso to enjoy a few hours of bliss during an otherwise unnerving time. While most couples look ahead to a honeymoon on their wedding night, Clark was preparing for open heart surgery.  

Benjamin Bryner, MD, a cardiac surgeon at Northwestern Medicine Bluhm Cardiovascular Institute, says he normally opts for a minimally invasive way to operate, but in Clark’s case, the mass on their heart was too big. Despite the infection and a suppressed immune system making Clark a poor candidate, open heart surgery was the only option.  

“We wanted to get this mass out as quickly as we could because we were worried about a bloodstream infection,” said Dr. Bryner. “The infection was not going to go away until we got the mass out. We have to try not to disturb other structures, and we don’t want pieces of the mass to break off and get sent to other parts of the body. So, we settled on opening the heart up and taking the mass out directly. The safest way to do that was through cardiopulmonary bypass, which is like a safety net that cardiac surgeons build for themselves. That allowed us to open the heart and salvage all of the blood that was coming out. We could then see this mass really clearly, lift it out of the heart, and then close it back up. Everything went very smoothly just like we had hoped.” 

Clark underwent surgery on October 10 and the mass was successfully removed. They spent a few weeks recovering in the hospital and are now enjoying their new married life with a healing heart.

The newlyweds are looking forward to their first holiday season as a married couple, with a lot to be thankful for.

To learn more about heart surgery and other cardiac treatments, visit nm.org.  

CHICAGO – After serving 21 years in the U.S. Army, Louis Smith’s heart only functioned at 10 percent. The father of three from Country Club Hills, Ill., had been visiting the Advanced Heart Failure Clinic at the Jesse Brown Veterans Affairs Medical Center (JBVA) for about one year before his symptoms suddenly got worse. Just before Thanksgiving 2023, the then 65-year-old was told he needed a new heart.  

Louis was transferred to Northwestern Memorial Hospital where he waited just two weeks for his new heart. Before his transplant surgery on December 31, 2023, he wasn’t nervous, wasn’t scared, but did have one request for his surgeon.  

“Can you do me a favor? When you cut me, can you try to save the tattoo on my chest?” said Smith. “It’s a saying that me and my late father used to say. We would listen to ‘I did it my way’ by Frank Sinatra. That’s our saying. If you can please not destroy the tattoo, I’ll be just fine.” 

Benjamin Bryner, MD, a cardiac surgeon at Northwestern Medicine Bluhm Cardiovascular Institute, made sure both the incision and stiches would preserve every inch of Smith’s tattoo.  

“Mr. Smith had some tattoos that we were eager to save as best we could,” said Dr. Bryner. “There’s no way to do a transplant without leaving a scar behind, but we did our best to make sure the tattoos would at least line up and we were happy with the final results.”

Serving His Country and Needing a New Heart

Smith enlisted in the Army when he was just 17 years old, following in the footsteps of his father. His more than two decades of service took him through tours in Saudi Arabia, Iraq, Germany, and Korea, but feeling his heart begin to fail was something this soldier was not prepared for.  

“I used to wake up every morning around two o’clock,” said Smith. “It felt like somebody was either choking me or standing on my chest. And I couldn’t breathe. It was like somebody just turned off my air.” 

Smith suffered from cardiac amyloidosis, an underdiagnosed disease that causes heart failure. It occurs when protein builds up and is deposited in tissues where it isn’t supposed to be. This can lead to organ damage, notably in the heart. Cardiac amyloidosis impacts up to 25 percent of people over the age of 80, with African American patients at a higher risk.  

During his time in the Army, Smith was active and never had any issues with his health. He was 63 years old by the time he learned about the genetic condition he’s had since birth. Because his case was so advanced, not only did he need a heart transplant, but Sarah Chuzi, MD, a heart failure and heart transplantation specialist at Northwestern Medicine Bluhm Cardiovascular Institute and JBVA, recommended he be moved up on the list.  

“I went to visit him in the hospital and noticed he was short of breath just walking from his bed to the bathroom,” said Dr. Chuzi. “That was so out of character for him, so unlike him. I could tell that he really felt like things were changing rapidly. So, we recommended that he not only be listed for heart transplant but that he be listed at a very high status which gave him priority on the heart transplant list.”

Almost one year later, Smith is doing well and is back to his old routine. He enjoys spending time with his wife of 47 years, Jacquelyn, his three children, six grandchildren, and one great-grandchild. Smith is an avid biker, and often takes cross-country trips with friends on his motorcycle. He’s even taken one trip with his new heart.  

“I’m a soldier and a heart transplant survivor,” said Smith. “And I love my new heart.” 

More about the Advanced Heat Failure Clinic at the Jesse Brown Veterans Affairs Medical Center 

For more than 77 years, Northwestern Medicine has partnered with the Jesse Brown Veterans Affairs Medical Center (JBVA) in Chicago. Medical residents from the hospital system rotate through the VA clinic during their medical training, and it’s the longest-running academic affiliation in the VA system.  

In 2022, Sarah Chuzi, MD, a heart failure and heart transplantation specialist at Northwestern Medicine Bluhm Cardiovascular Institute, established an Advanced Heart Failure Clinic at JBVA. Dr. Chuzi rotated through JBVA during her medical training and since then, she’s dedicated her career to helping veterans.

“The JBVA is very unique,” said Dr. Chuzi. “We serve about 62,000 veterans and about 70 percent of those veterans identify as Black. That is a population that is very underserved for a number of reasons. They face a lot of health barriers but also a lot of structural barriers to health like systemic racism, a lot of trauma, and PTSD. The combination of all these factors really does adversely affect their health.”

The clinic offers evidence-based heart failure care that includes medical therapy, devices, and other diagnostic tests and procedures. Patients from the heart failure clinic are often referred to Northwestern Medicine for specialized surgeries and treatments. Dr. Chuzi and her team will soon participate in heart failure clinical trials out of JBVA, including ones looking at new medications to improve patient outcomes.

To learn more about heart failure treatment options, visit nm.org. 

CHICAGO — When Michael DiLillo’s phone rang early on a Saturday morning, he was not prepared for the life-altering news awaiting him on the other end. The previous day he had undergone a series of cardiac tests and now his cardiologist was calling on the weekend.

“We were home babysitting our grandchildren when I saw he was calling. I remember him saying ‘I need to tell you something important. I hope you’re sitting down.’ That’s when I knew we were facing something serious,” recalled DiLillo, 69, a resident of St. Charles, Ill., in Chicago’s western suburbs.

For several months, DiLillo had noticed a slight tightness in his chest. He saw several physicians who told him he was going through the normal process of aging, but he wasn’t convinced.

“I was experiencing some chest issues – not severe or to the point where it limited my activity, but I knew something wasn’t quite right,” said DiLillo, who kept searching for answers. “When I got an appointment with Dr. Severino, he ordered tests and figured it out very quickly.”

When Michael J. Severino, MD, cardiologist at Northwestern Medicine Bluhm Cardiovascular Institute, called DiLillo on that Saturday morning, he informed him that the symptoms were the result of a large mass encroaching into his heart. He told his patient to head to the emergency department quickly to undergo further testing.

“When I saw the test results, I had to take a few minutes and decide how I was going to handle this because it was an earth-shattering result for the patient,” said Dr. Severino, who practices at Northwestern Medicine Central DuPage Hospital and Northwestern Medicine Delnor Hospital. “I’ve been in practice almost 30 years and I’ve never seen this type of tumor in this location.”

The tumor was growing into and causing damage to DiLillo’s heart. Treatment would require extensive surgery to not only remove the mass, but to also repair the damage to his heart. He consulted with surgeons at multiple hospitals, but none were willing to take on the surgery because of its complexity and risk.

“No one wanted to the do the surgery because they thought it was too risky. One surgeon said, ‘I can’t tell you with a clear conscience that you’ll survive surgery,’” said DiLillo. “I was scared beyond belief. I told [my wife] Marianne that we needed to put our financial house in order. I thought I was going to die.”

That was until he got to Northwestern Memorial Hospital. DiLillo first saw Samuel S. Kim, MD, thoracic surgeon at Canning Thoracic Institute, who brought his case to the hospital’s tumor board, a multidisciplinary team of experts who meet to discuss complex cancer patient cases and determine the best treatment plan.

“The patient was running on borrowed time and surgery was his only option for survival,” explained Dr. Kim. “At Northwestern Medicine, our surgeons are known for taking on the most difficult cases and we knew we had the right team in place to help Michael.”

After discussing DiLillo’s tumor, the tumor board agreed it would require the expertise of a cardiac surgeon given the damage to the heart, which is when Christopher K. Mehta, MD, cardiac surgeon at Bluhm Cardiovascular Institute, was brought into the case.

“I’ve seen a handful of these tumors, and this was by far the most aggressive appearing cancer, especially from what we could tell from the imaging and the echocardiogram,” said Dr. Mehta. “The sheer size of the tumor, which was the size of a football, was causing it to invade the structures of the heart, which made it particularly challenging to deal with.”

Despite the tumor’s size and complexity of the surgery it would require, Dr. Mehta agreed to operate, but warned DiLillo and his family that it would not come without risk.

“The tumor was invading and compressing the pulmonary valve and the pulmonary artery, which move blood from the heart to the lungs,” said Dr. Mehta. “Once we removed the entire tumor, we would then be faced with having to reconstruct the heart in a way that he could live a normal life. It was a very involved surgical case.”

The surgical team operated for 12 hours removing the entire tumor then repairing the damage it caused to the structures of his heart, including rebuilding the pulmonary valve. For DiLillo’s family, the wait was agony.

“My kids were there with me, and we were all scared. It was a rollercoaster. We had ourselves prepared that he wasn’t going to make it,” said Marianne DiLillo, Michael’s wife of 41 years. “When Dr. Mehta came out and said everything went well, we couldn’t believe it. He let us all hug him and was so positive about the surgery but told us the recovery was still going to be a long journey.”

For Dr. Mehta and team, the relief was shared especially after seeing the tumor’s true size once it was removed. The tumor weighed more than 1.5 pounds, which is more than double the weight of the average human heart.

“When we opened Michael’s chest, you couldn’t see his heart because the tumor was so massive. We all breathed a sigh of relief when this surgery was complete,” said Dr. Mehta. “Michael still had a long road ahead of him, but we gave him an opportunity to keep fighting.”

Following surgery, DiLillo remained in the intensive care unit (ICU) for five weeks then transferred to an acute rehab facility for more than two months.

“From the time we had the surgery planned until several weeks after was a blur to me,” said DiLillo. “Having Marianne by my side and making big decisions was insurmountable because I could have never been able to function on my own.”

Primary tumors of the heart are extremely rare with malignant cardiac tumors being even more uncommon. Less than 10% of all primary heart tumors are cancerous affecting approximately 8,000 people worldwide. By comparison, breast cancer impacts more than 240,000 people each year in the United States alone. When cancers do occur in and around the heart, most often the cancer started elsewhere and spread to the heart.

“When the pathologists got back to us about the type of tumor, they were very surprised to find that it was a liposarcoma, which is a rare type of cancer that starts in soft tissues,” said Dr. Mehta. “While Michael previously had a liposarcoma in his leg more than ten years earlier, the pathologist felt this was a primary tumor meaning it had started in the chest and then invaded into the heart. These represent about one percent of cancers of the heart, so it’s a very rare diagnosis.”

While DiLillo’s recovery has been long and challenging, he continues to grow stronger every day and recently enjoyed celebrating his first Christmas since the surgery with Marianne, their three grown children and their spouses and five grandchildren with number six on the way in March.

“You get a whole new perspective in how important every day is – you don’t want to waste time, you don’t know how much time you have,” said DiLillo when reflecting on the surgery and his recovery. “I have a second lease on life. I feel blessed that we found the right people who could help us. Dr. Severino found it when others said I was fine. Dr. Mehta took it on when others said, ‘I can’t help you.’ Northwestern saved my life.”

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Dr. Simpson joined Northwestern Medicine in 2018. She developed the Northwestern Medicine African American Transplant Access Program (AATAP) to increase equitable access to transplantation and to help patients address cultural concerns and overcome modifiable structural and institutional barriers to receive care they need. With her new role, she will continue to provide clinical leadership over AATAP.

“Dr. Simpson is deeply committed to health equity, and she has long endeavored to address the issues that prevent patients from accessing high-quality care to achieve their highest quality of health,” said Howard Chrisman, MD, president and chief executive officer of Northwestern Memorial HealthCare. “Her background in transplant health equity, as well as her ability to listen and partner with communities and other leaders, will help us reduce barriers and better serve our patients and their families.”

After completing medical school at New York University, Dr. Simpson moved to Boston for a surgical residency through Harvard Medical School and completed her transplant surgery fellowship training at the Hospital of the University of Pennsylvania. In addition to her clinical focus on liver and kidney transplants and her work as an associate professor of surgery in the Division of Organ Transplantation at Feinberg School of Medicine, Dr. Simpson is the vice chair of faculty development and diversity in the Department of Surgery.

She sits on the board of directors for the National Kidney Foundation of Illinois, and is the past diversity, equity and inclusion adviser for the American Society of Transplant Surgeons (ASTS). She chaired the ASTS Boldly Against Racism Task Force and was recently elected to sit on the society’s board of councilors.

“I am beyond proud to be a part of this institution that has called out health equity as a main pillar of its core values," Dr. Simpson said. "Health equity is a space where there is always room for discovery, growth and improvement. It is with humility that I embrace this opportunity to guide Northwestern Medicine’s system-wide approach as we leverage the strengths of our clinicians, administrators, educators and researchers to better serve our communities. We must continue to critically evaluate and address health disparities for all and seek new ways to enhance wellness in all the communities we serve.”