Leon Lewis thought he was going to die. In fact, he was sure of it. It was the Fourth of July, 2016, and on America’s 240th birthday, Lewis didn’t think he’d make it to 241.
“I remember sitting there and thinking, ‘I’m not going to see another one of these,’” Lewis recalls. “I only had months to live, maybe weeks. I could feel it — I just knew I didn’t have long left.”
Almost a year prior, Lewis learned that he needed a liver transplant, and for almost six months, he’d been on a waiting list, anxiously anticipating a call that might never come, or come too late. Luckily, Lewis’ call came just nine days later, and — despite a grueling process leading up to and recovering from the procedure — six years later, he says he feels as good now, at 67, as he did when he was 40.
Taken to the brink of death and then given a new shot at life, Lewis tells his story with the hope that he might encourage others to register as organ donors. He knows that he would not be alive today if someone else hadn’t made the selfless gesture, and it’s fitting that he shares his experience at the end of April, which is National Donate Life Month.
“I think most people, including me before I needed an organ, you just never think about it,” he says. “I would absolutely encourage people to do it — you could save someone’s life. It saved mine.”
A chance to live
In the summer of 2015, Leon Lewis was sick. He knew this much but little else.
“I was in liver failure and just didn’t know it,” Lewis says. “When you’re in liver failure, you start having all kinds of issues. Your kidneys start to shut down, and that creates problems with your whole body, and that leads to other things shutting down or having to overwork. You start creating ammonia in the brain, which can cause you to lose your sense of orientation.”
It’s easy to assume that a diagnosis of liver failure would be scary, and Lewis admits that it was, but he also says it came as a relief because at least he knew what was causing him to be so sick. His symptoms had become debilitating, and the stress was magnified due to not knowing the cause.
“The first thought that went through my mind when they told me I needed a transplant, it was a godsend just to know that I could get one,” Lewis says. “You’re scared a little bit because you can only imagine what the process might be, but all in all, it was a relief to know you have a chance to live.”
Lewis was at Audubon Hospital in Louisville when doctors first told him he needed a transplant. They put him on a long list of medications, as well as a physical rehab regime, attempting to control his condition and build strength until he could get placed on a waiting list for a transplant.
“The process was, you keep going back and getting more and more advisement, and then finally you get on the list — it’s very tough to get on the list,” Lewis explains. “It was probably six months from finding out I needed a transplant to getting on the list and then another six months on the list before I got the transplant.”
Lewis had to prove strong enough to even make the waiting list. He went through two full days of tests at UK, where doctors sent him from Louisville. Specialists poked and prodded, tested and scanned everything from Lewis’ teeth to his head to his feet.
“I had to do a stress test, and I tried to get out of it,” Lewis remembers. “I said, ‘I don’t have any shoes,’ and this lady said, ‘Well, I have shoes — you’ve got to go,’ so I did it and I passed the stress test with the walker on the treadmill. That was all just to establish that I was a candidate for a transplant.”
It took several months, but eventually, Lewis was put on a waiting list. The road ahead was still a long one, but at least he knew which direction he was headed — if he could survive long enough.
The waiting game & the power of prayer
Once on the list, Lewis tried to keep a positive outlook. He did everything in his power, which was not all that much, to stay ready and healthy. For months, he kept an overnight bag at the ready, there for him to grab if the call for a transplant ever came.
“Once you get through the tests and the screening process, you get on the list, but there’s no guarantee you’ll ever get a transplant,” Lewis says. “I could have easily died before I got it.”
During the tumultuous year, from the diagnosis, to getting on the waiting list, to finally getting approved for surgery, Lewis’ symptoms progressively worsened, his health deteriorating with each passing week.
“It’s like a see-saw — to control one thing, you throw something else out of order, so it’s a constant battle, and the whole time, my kidneys are deteriorating,” Lewis says. “It’s very common for liver and kidneys to go together. At one point I even thought I was looking at a double transplant, but praise God, I didn’t have to do that.”
Not knowing what the future held was frustrating for Lewis, as would be expected. He wondered what might happen to him and how his family would deal with it. He found solace in prayer.
“I prayed a lot,” Lewis says. “I got closer to God, for sure.”
If Lewis leaned on his relationship with God to get him through his darkest, most uncertain moments, it’s because he had already seen the impact of prayer — literally. He recalls a moment not long after his diagnosis, when his future was murky and he feared the worst.
“I remember being at Audubon Hospital, and I was very sick,” Lewis says, “and I could see prayers coming out of the walls, and that’s the only way I know how to describe it: I could see them coming out of the walls.”
The time spent on the wait list was stressful for its entire duration. Lewis had to keep himself ready — ready to make the two-hour drive to Lexington at a moment’s notice. He kept an overnight bag packed, set for a quick grab-and-go whenever the call came. He kept his eyes on the calendar and on the clock and on his phone. He was restless. And the whole time, his body continued to deteriorate, as one does without a functioning liver. This went on for months.
The call
It was lunchtime — July 13, 2016. Nine days after that melancholy Fourth of July, the one Lewis surmised would be his last, he was sitting in front of his TV, halfheartedly working to down a bowl of soup. The phone rang. It was The Call, the one he had spent months preparing for, praying for, the one he wondered if he would live long enough to answer.
“You get the call, and then you scramble,” Lewis remembers. In an instant, the day turned from identical to the day before, and the day before that, to something new entirely. In just a few hours, Lewis’ surgery would begin, lasting through the night and into the following morning. It was a dangerous operation, which Lewis knew going in, and he nearly didn’t survive the procedure.
“Before I went in, I had my preacher there, my family there, and we all prayed, and then I don’t really remember anything after that,” Lewis explains. “You know going into the surgery that you might not make it out, and I actually flatlined three times during the surgery and they resuscitated me each time.”
Lewis tells the story matter-of-factly, his grin dulling the edges of the grim fate he so narrowly avoided. With the tragedy-that-somehow-wasn’t firmly in the rearview mirror, five years removed, he can smile about it.
That smile didn’t return immediately, even after the victory that was surviving surgery. Setbacks and false starts abounded, but Lewis — thanks in no small part to his wife, Ann, and his adult children, Chris and LeAnna — kept a positive outlook. He was determined to get better no matter what challenge lay before him, and the challenges came almost immediately.
‘Then my kidneys shut down’
“After I got out of surgery — I don’t know how long it was, maybe a day — I had to go back in because I was bleeding internally,” Lewis recalls. “We had to go back into surgery to patch that up, which I have no memory of at all. Then when I finally came back to, I was in ICU, and I had tubes everywhere, one of them all the way down into my heart.”
Lewis estimates that it was probably three to five days after the surgery before he regained full consciousness and awareness, although he could do little to communicate this breakthrough in his recovery.
“I was very uncomfortable because I could see and hear, but I couldn’t move, couldn’t talk, couldn’t communicate at all,” Lewis says. “That was the most frustrating thing to me. That lasted a few days until they could take that tube out. Then I could kind of grunt.”
After a few days, Lewis was moved out of ICU, and he saw quick improvements. More and more IVs came out, more and more tubes were removed, and he thought he was on the uptick.
“Then my kidneys shut down,” he says. This development brought with it its own set of problems. He needed medication to keep fluid off his lungs, but that same medicine stresses the kidneys, a catch-22 that required a balancing act from doctors in charge of Lewis’ recovery.
“The doctors said that the liver is the first thing to bounce back after surgery and the kidneys are the last,” Lewis says. “They’re saying this is all part of the process, so finally the kidneys kicked in. They’re also checking my heart and everything else along the way, so every day during this time I was going somewhere to get an image made or a test done — it was exhausting.”
Lewis says he saw so many doctors during this period that he couldn’t keep track, hopeless to remember the revolving door of names and faces in white coats holding pens and clipboards. Eventually he was deemed strong enough to leave but not to stray too far. He rented an apartment in Lexington to remain close by. He worked to regain his strength but had little appetite.
A week later, on a sweltering late-July Saturday, Lewis was back at the hospital, this time in the emergency room.
“They admitted me, and I stayed in the ER area for like two days because they didn’t have any beds,” he says. “It was kind of a battle between the ER doctors and my liver doctors on what to even do with me, but I couldn’t breathe. I had so much fluid, and that’s from the kidneys not cooperating.”
A God thing
Following the transplant, Lewis never doubted that he would get better. The trepidation he felt before the surgery was gone, despite the setbacks that followed. His family noticed the change almost immediately.
“Here’s the crazy thing — before my surgery, I was yellow, my skin was,” Lewis says, “and I didn’t look good at all. As soon as my family saw me after the transplant, my skin looked better, cleaner. I was white again — the liver went to work that fast.”
While his appearance improved almost as soon as he was stitched up after the transplant, Lewis says it took some time before he felt better.
“That happened after I went back to the hospital the second time, after we left the apartment,” Lewis explains. “I got stronger, started walking, and then I remember one day I finally got to go outside. It’s like you needed glasses and didn’t know it, but then you put them on and you can see.”
Lewis recalls the moment in vivid detail, explaining the experience as spiritual.
“It was a God moment for me, because I had never seen nature that vividly,” he says. “It was crazy — this is probably a month or six weeks after the transplant. That’s when I started getting strong enough to beg to go home, and finally, they let me.”
Leaning on family
By the time doctors cleared Lewis to head back to his home in Columbia, he already felt better than he did before the transplant. In fact, he hadn’t felt so good in years. He was motivated by an experience from months earlier, when he was already sick but did not yet know he needed a liver transplant.
“I spent some time in physical rehab in Louisville, and it was basically a nursing home,” Lewis says. “That was the loneliest, saddest time of my life because I was away from my family, I didn’t know what my future held, I was sick, and I was watching other people get wheeled in and out, day after day. That was probably the lowest point of my entire life.”
Lewis says he would not be here today without the unwavering support of his family and their efforts to care for him when he was sick and during his recovery. He doubts he would have even received a transplant if it weren’t for Ann and their children. He says that other than prayer, his family was the most important factor in his recuperation.
“If I had gone up there alone and had nobody, I don’t think I would have ever gotten on the list,” he says. “There are a few reasons I got better, and it was a combination of my family and friends supporting me, my doctors, and a lot of prayers. Prayer is so powerful. One thing UK does before a transplant is evaluate your family and social situation because they know you’re going to need support, that you can’t do it on your own.”
Ann shared her husband’s anxiety during the bad times and was a constant positive presence during his recovery. Lewis says seeing the strain his illness put on his family was challenging.
“It was hard on my whole family, but Ann in particular was very stressed,” Lewis says of his wife, “because she was in charge of my medications, and she was so scared to make a mistake. I was on all kinds of different medications.”
Lewis shares a story about Ann that they now laugh about, about a mistake that wasn’t.
Taking on the tall task of administering Lewis’ medicine, Ann was diligent in her efforts. Lewis got the meds he was prescribed, at the appropriate times, in the appropriate amounts, every day. Without realizing her error, however, she had doubled his dosage of blood pressure medicine, giving her husband twice the prescribed dosage every day. Luckily for Ann and Leon, the next time he went for a checkup, the doctor said his blood pressure medicine should have been double what was prescribed.
“She was giving me exactly what I needed, but they didn’t know it yet,” Lewis says with a laugh. “She was kind of a step ahead of the doctors on that one, even though she didn’t mean to be.”
Making the most out of every day
Lewis manages his own pills these days, and it’s an easier job than it used to be. While he was once gulping down dozens of pills every day, he’s down to six now. He dedicated himself to maintaining a healthy lifestyle and found that the more he did, the better he felt, and the better he felt, the more he wanted to do.
The new liver — and new chance at an active life — is not something Lewis takes for granted. He hits the gym for a workout at least two or three days a week, and he plays golf every chance he gets.
“I also walk quite a bit — probably five miles a week,” Lewis adds. “I feel good. I had been sick for several years and didn’t know it, so this is the best I’ve felt in years. I feel as good as I did when I was 40, and I thank God every day for that blessing.”
In Lewis’ recovery, he found a renewed passion for singing. He explains his desire to sing and record music now not as a choice but a directive that came to him while he was still hospitalized — “a religious experience,” in his words. Laying in his bed one lonely night after surgery, listening to the radio, the message came.
“They played an Elvis song, ‘No One Stands Alone,’” Lewis remembers. “That’s when God said, ‘You’re going to get out, but you’re going to start singing for me.’ The first thing I did once I got home and I was well enough, I went down to Red Brick Studios [on the Public Square in Columbia] and recorded that song.”
“No One Stands Alone” was the first song Lewis recorded, and he’s added dozens to his library since that initial recording. He has self-published two albums, titled “My Favorites” Volume One and Two, consisting of gospel numbers and covers of classic rock and pop staples. He sings in church every Sunday, and his songs sometimes play on local radio.
The active lifestyle and the musical endeavors are indicators of Lewis’ improved health. He says the biggest change in his life since his illness and transplant, however, has been internal.
“It changes your perspective on life, really and truly,” Lewis says. “I try to make the most of every day I have now. I try to see other people more than I used to, and I try to understand their point of view — just try to be a better person. I died three times, so you feel thankful for each day you have.
“The most important thing to come out of this for me is that I’ve gotten so much closer to God and my faith is so much stronger,” he adds. “I think he saved me for a purpose.”
