Sharing Mayo Clinic: Facing death and fighting back

Sharing Mayo Clinic: Facing death and fighting back

By
Dana Sparks

November 11, 2018

When doctors said there was nothing they could do for his end-stage liver disease, Danny Willis refused to give up. He obtained a lifesaving transplant at Mayo Clinic. And even a near-fatal setback after that couldn't stop him from reclaiming his health.

Danny Willis isn't a big fan of superheroes, yet the former Mayo Clinic patient boasts a large Superman tattoo on his neck. The tattoo represents a death-defying fight Danny waged for years and ultimately won. He not only survived severe liver failure by undergoing a liver transplant at Mayo Clinic, but he also overcame mucormycosis, a deadly fungal disease that cost him part of his lung, kidney, leg and shoulder.

Danny committed to getting the tattoo just months before coming to Mayo Clinic's Rochester campus. While hospitalized near his home in Owensboro, Kentucky, and facing a grim prediction that he likely wouldn't survive the night, Danny made a promise to his distraught best friend.

"It took everything I could to say to him that I'm going to make it through this," Danny says. He also told his friend, "And after I get through it, I'm going to get Superman tattooed on my neck."

When Danny regained his health, he debated the body art. "I wanted to be a minister, and I was like, 'Should I get a neck tattoo?' I said I was going to, but I didn't know. And I asked for a sign."

The next day, the owner of a local tattoo studio called him. The owner had heard about Danny's pledge to his friend, and he offered to ink Danny for free.

"Now people come up and ask me all the time, 'Why would you get a Superman tattoo?'" says Danny, who is pursuing that career in the ministry. "And I get to tell them my story."

Gravely ill and out of options

The person Danny was at the beginning of his story bears little resemblance to the person he is today. Morbidly obese and working 80 to 90 hours a week, Danny had poor nutrition and little time to exercise. His weight caused numerous health concerns. In 2012, he was diagnosed with advanced cirrhosis.

"I honestly look back at the other part of my life as if I was someone else," he says. "The wrong decisions I made had me where I was dying."

Danny says his weight prevented him from being placed on the transplant list, and his doctor didn't give him much hope.

"He said, basically, that I was terminally ill, and there's nothing he could do for me," Danny says.

Then Danny heard that Mayo Clinic sometimes could help patients other facilities could not. A call was made, and Danny got an appointment at the Mayo Clinic Transplant Center. In late November 2012, Danny headed to Rochester. "It was a shot in the dark," he says.

He was very sick when he arrived for his appointment, according to Julie Heimbach, M.D., a surgeon in the Liver Transplant Program.

"He had obesity-related liver disease, which is the most common type of liver disease in the U.S.," Dr. Heimbach says.

"My youngest son was only 9 at the time. I wanted to raise my son and see him grow into a man." — Danny Willis

But Danny's weight made him a candidate for Mayo Clinic's obesity-related liver transplant protocol. Offered at only a handful of hospitals in the nation, this protocol combines a weight-loss program with a sleeve gastrectomy surgery that's done in tandem with a liver transplant.

The sleeve gastrectomy surgery reshapes the stomach from a round bag into a small, slender tube that restricts the amount of food a person can ingest, resulting in more durable treatment for obesity.

Transplant success, devastating infection

After being accepted into the protocol, Danny got to work.

"For about a month, I didn't do anything but eat apples and drink water. I was doing everything I could. I wanted to live," says Danny, who stayed at Rochester's Gift of Life Transplant House prior to his transplant. "My youngest son was only 9 at the time. I wanted to raise my son and see him grow into a man."

Despite Danny's efforts, his liver disease worsened. In 2013, he was admitted into intensive care at Mayo Clinic Hospital — Rochester, Saint Marys Campus. In the ICU, Danny slipped in and out of consciousness. "The last time I went into the hospital, I don't really remember much else until I started getting better," he says.

During that time, Danny required varying levels of life support. More than once, he was sedated and connected to a ventilator to help him breathe. Danny says he was perilously close to being disconnected from life support. But on May 23, 2013, a donor liver became available, and Danny underwent a transplant.

After surgery, Danny's medical team waited for him to regain function. When two weeks passed with little progress, Danny's physicians discovered that he'd contracted the fungal infection called mucormycosis.

People who have organ transplants tend to be susceptible to this infection, as are individuals who have Type 1 diabetes, blood cancers and low white blood cell counts. It develops when patients breathe in fungal spores present in the environment. The infection can affect the lungs, gastrointestinal tract, skin, brain and other organ systems, says Paul Deziel, a physician assistant who runs Mayo Clinic's Outpatient Transplant Infection Disease Clinic.

"Most of the time, when this infection is acquired in the presence of immunosuppression, the patient would not survive. It's quite a miracle that he did." — Julie Heimbach, M.D.

Among transplant patients who develop mucormycosis in only one body system, the survival rate is about 52 percent. When the infection spreads to multiple areas, the survival rate decreases dramatically. Danny's infection was widely disseminated, affecting his lungs, kidneys and muscles.

While it's likely that Danny had contracted the infection before his transplant, it only became evident afterward that it was spreading, and it required aggressive treatment.

Surgical removal of the infected tissue is the only way to get rid of the infection. In Danny's case, this included removing parts of his right lung, kidney, right shoulder muscle and left thigh muscle. After that surgery, Danny had daily infusions of antifungal medication for six months. He'll have to take an oral antifungal medication for the rest of his life. Given the seriousness of Danny’s infection, his outcome is remarkable, according to Dr. Heimbach.

"Most of the time, when this infection is acquired in the presence of immunosuppression, the patient would not survive," she says. "It's quite a miracle that he did."

Danny remained hospitalized through the end of the summer. After that, he was transferred to an inpatient rehabilitation facility for two months to regain his strength and learn how to walk again. In October 2013, Danny was able to go home.

Highly motivated and completely changed

Several factors played into Danny's ability to overcome the infection, including his state of mind.

"He got the transplant and got a really good functioning liver," Dr. Heimbach says. "In addition to that, he didn't give up on himself. Even though he had to have multiple surgeries and a long rehab when he wasn't feeling good, he had to get up and move. And he had the strength and the motivation to do that."

Danny's motivation came in the form of his youngest son, Kage. During the moments he felt closest to death, Danny says he'd close his eyes and picture his son. "He was the only one who believed I was going to live."

The compassionate support he received from his Mayo Clinic care team also was instrumental in his recovery.

"I saw good people in the church and in the hospital while I was sick and getting better afterwards, and that's who I wanted to be." — Danny Willis

"I was there by myself, and the people in the hospital were all the support I had. They were amazing," Danny says. "I remember waking up and one of the nurses was just standing in the room, watching me, because she cared. There was a nurse practitioner who would come in and change my wound vac every day. She was the one who was in charge of me, and I remember when I sat up in bed for the first time, she cried. She became part of my family."

While Danny has made an about-face in his lifestyle — he eats well, joined a gym and now carries just 200 pounds on his 6-foot-4-inch frame — he says the ultimate credit for his remarkable survival and recovery rests with God. "He's the one," Danny says, "that got me through this for real."

Bearing witness to the kindness of his Mayo Clinic health care providers and others convinced him to pursue the ministry.

"I saw good people in the church and in the hospital while I was sick and getting better afterwards, and that's who I wanted to be," he says. "I didn't want to be tough any more. In fact, it was the opposite. I have a kind heart toward everyone. We should extend our love to those who are hard to love. I was once hard to love, and it was through other people showing me love that made me want to love."

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