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Bruce Smith

Facing permanent brain damage, patient turns to UK for unlikely answer: a liver transplant

In 2011, Bruce Smith sat in his office preparing to make handouts for a meeting, like any other normal work day. But when he sat in front of his computer, he suddenly realized something frightening: He’d lost all understanding of how to use the machine. Bewildered at the sudden lapse in cognition, he said his coworkers thought he was joking around.

“I finally said, ‘I’m serious!'” Smith said. “‘There’s something going on here.'”

That moment was the first of many “lapses” to come. Smith was a diabetic, and his doctors initially thought his mental fog episodes were due to low blood sugar. When that was ruled out, they suspected he might be suffering from a series of mini-strokes.

“It was like I was taking a trip but never leaving the farm, you know?” said Smith, who is from Belfry, Ky. “I was awake but always taking naps.”

It wasn’t until Smith was referred to UK HealthCare that he got a diagnosis: hepatic encephalopathy, a term used to describe the mental fog that accompanies severe liver failure and a common occurrence in patients in need of a transplant. The liver’s job is to filter toxins from the body, and when it fails, the toxins accumulate in the bloodstream and wreak havoc elsewhere.

The team at UK determined that Smith’s liver was failing due to non-alcoholic cirrhosis. Although neither of his parents had the disease, one may have been a carrier and passed the gene down to Smith.

After getting a second opinion from the Cleveland Clinic confirming the diagnosis, Smith opted to remain at UK to be listed for a transplant. Liver transplant patients are assessed with a score known as the Model for End-stage Liver Disease, or MELD, which measures the amount of toxins in the blood and determines the patient’s position on the transplant waiting list. The higher the MELD score, the greater the severity of the disease and need for transplant.

Making the case for a transplant

Smith’s MELD score remained relatively stable for the next four years. However, his mental function continued to decline. As Smith’s symptoms worsened, his doctors at UK referred him to neurologists at the Kentucky Neuroscience Institute, where they diagnosed him with a much more serious condition.

“Bruce started out with hepatic encephalopathy, but then developed hepatocerebral degeneration, an extremely rare form of brain injury,” said Dr. Malay Shah, director of the liver transplant program at UK. “The exact cause of this disease is unknown, but liver transplant is the only cure.”

Many symptoms of hepatocerebral degeneration closely resemble those of Parkinson’s disease. In Smith’s case, he had trouble with speech, gait ataxia (uncoordinated movement and problems with balance) and ever-worsening dementia. Smith says he was essentially home-bound. He was unable to return to work, often couldn’t go to church and avoided going out for fear of experiencing an episode.

“I was asking, ‘Why me, Lord?'” he said. “‘What’s going on?'”

Although Smith’s liver toxicity remained stable – thus keeping his MELD score lower than necessary to receive a transplant – Shah said he knew he needed to push harder for Smith to be transplanted as soon as possible. He wrote a letter of appeal to the United Network for Organ Sharing (UNOS), a nonprofit organization that manages the nation’s organ transplant system, making the case for the severity of Smith’s situation.

“I appealed to UNOS to make Bruce’s MELD score higher than his lab values would suggest because hepatocerebral degeneration needs to be treated with a liver transplant,” Shah said. “Without an expeditious transplant, this disorder becomes permanent and irreversible. At that point, a transplant would be contraindicated because of the permanent neurologic damage from the disease.”

Shah’s appeal was successful, and on Sept. 27, 2015, Smith got a call from UK just as he was arriving home from church. He and his wife packed up and headed to Lexington to prep for surgery.

“I had all this happiness, excitement,” Smith said. “But also the fright of undergoing a major surgery.”

At 2 a.m. the next morning, Smith received his new liver – and a new lease on life. Since his transplant, things have improved drastically. He recovered fully from the surgery, and he underwent physical and occupational therapy to build back his strength and improve some of the basic skills he’d lost during his illness.

“I had to relearn how to write straight,” Smith said. “I had to use a ruler to sign paperwork.”

Becoming an organ donor advocate

As a surgeon who sees firsthand what a difference a transplant can make in the lives of his patients, Shah is passionate about raising awareness for organ donation. He notes that part of his job is making sure patients understand the gift they’ve been given.

“Our patients rely on the generosity of others to have a second chance in life,” Shah said. “And that’s exactly what I impart on my patients prior to transplant – that they and I literally owe it to the donor and their family to do the very best we can to take care of that generous gift.”

One way Smith is using his gift is by educating others on his personal experience. He is now a member and ambassador for Kentucky Organ Donor Affiliates (KODA), the organization that runs the Kentucky Organ Donor Registry, educates the public on organ donation and honors those who have given the gift of life. He was recently featured on a billboard for KODA in Eastern Kentucky and says sharing his story is one thing he can do to honor his donor.

“What a selfless decision that person, or their family, made,” Smith said. “This is my way of giving back. Hopefully, it will get folks interested in becoming a donor and ultimately making a difference in someone else’s life.”

“Bruce is a wonderful patient and a great donor advocate for KODA,” Shah said. “It’s nice to see folks like him work with the organ bank to help educate others in their respective communities about how organ donation can help their neighbors.”

Although he is unable to work, Smith has returned to an active lifestyle that includes walking, performing and creating. He plays guitar as a hobby and gives lessons to those in his community. He has a small workshop behind his house, where he dabbles in woodworking and metalworking. None of these things would have been possible without the transplant he received a little less than two years ago.

But perhaps most importantly, he says, he lived to be able to hold his first grandchild, born just over a month ago, with a second grandchild coming next month.

“You push through death’s doors and go through what I’ve been through,” Smith said, describing his thoughts when he first held his grandchild, “and I just thank God that I’m alive to hold this little thing.”

Smith holding his newborn granddaughter -- his first.

Smith holding his newborn granddaughter.


Next steps:

Sign up now to become an organ donor and help save lives

Nearly 1,000 Kentuckians are currently waiting for a life-saving organ donation. April is National Donate Life Month, and the perfect time to think about becoming an organ donor. If you’re interested in becoming an organ donor, but not sure exactly what it entails, check out our frequently asked questions below.

How many people are waiting for an organ transplant?

More than 119,000 people nationally are currently waiting for an organ transplant. About 134 people are added to the waiting list each day one every 10 minutes. Although approximately 80 organ transplants take place every day, on average, 18 patients die each day while waiting because the organ they needed did not become available in time.

What is the difference between organ and tissue donation?

Organ donation involves the transplantation of solid organs, such as the heart, lungs, kidneys, liver and pancreas. However, tissue donation is also extremely important. More than 1 million tissue transplants are done nationally each year, and the surgical need for tissue has been steadily rising.

Examples of tissue that can be donated include skin, bone, heart valves, blood vessels and even corneas. These donated tissues can make a huge difference in the quality of life for many patients.

What is “living donation?”

Although most donations will take place after the donor is deceased, it is possible for a living person to donate some organs or tissues. The most common is living kidney donation because humans have two kidneys, it is possible for a person to donate one kidney. Additionally, lobes of the liver or lungs can be given by a living donor. Tissues that can be donated by a living donor include skin, bone marrow and blood stem cells.

Most living donations take place between family or close friends, but sometimes they do take place between complete strangers.

Am I too old to become an organ donor?

No. You can sign up to be an organ donor, regardless of your age or medical history. The transplant team will determine at the time of your death whether your organs are healthy enough to be donated.

If I’m a donor, will doctors try to save my life?

Yes! If you’re admitted to the hospital, your doctor’s priority is your health and well-being. Donation will not be considered until all other lifesaving options have been pursued.

How can I become an organ donor?

The best way to become an organ donor is to join the Organ Donor Registry. You can do this at the DMV when you renew your driver’s license, or join online anytime at donatelifeky.org.

A single donor can save or improve the lives of more than 50 people through organ and tissue donation. It only takes minutes to join the registry, and your decision could give the gift of life to a patient in dire need.


Next steps:

  • Learn more about the UK Transplant Center, which specializes in the care of patients with advanced, end-stage organ disease. Each year, we perform more than 170 transplant procedures, helping patients from initial consultation through surgery and beyond.
  • Find out more about becoming a living donor and how the UK Transplant Center can help you through the process.
This Making the Rounds features Dr. Gerhard Hildebrandt, division chief of hematology and blood and marrow transplantation at the UK Markey Cancer Center.

Meet Dr. Gerhard Hildebrandt, hematologist: ‘We’re here to help’

Making the RoundsIn this week’s edition of Making the Rounds, we’re joined by Dr. Gerhard Hildebrandt, division chief of hematology and blood and marrow transplantation at the UK Markey Cancer Center. Dr. Hildebrandt moved to the United States in 2009 after earning his medical degree in Germany.

What kinds of cancer do you treat?

We treat cancers of the blood and lymph system. We treat leukemia, we treat lymphoma, we treat multiple myeoma. We do treat benign disorders of the blood, like clotting disorders and bleeding disorders, but my special focus is in malignant hematology, which is really cancer of the blood and lymph system, and also bone marrow transplantation.

What do you most enjoy about your specialty?

I think that the chance to offer something, which, in a horrific moment in a patient’s life, can bring light – it’s just very satisfying. The other thing is, I do not fix and disconnect with the patients. I think in our field there are long-lasting relationships with the patients, and this is a thing which makes it unique and very exciting for me.

What do you want potential patients to know about you?

What I want them to know is that not only me, but our entire team really, really cares for them. And that we really spend the time they need. There’s no rush. My favorite slogan is always, “There’s no rushing medicine.” See, we do not rush patients in and out – that’s not what we’re here for. We’re here to help.

How would your friends and family describe you?

Ambitious, hardworking – maybe overly hardworking. But on the other side I’m very childish. You know, fun-loving.

Describe your ideal weekend.

I’d spend it with my kids. I usually take my son for swimming, and we usually have a movie night on one of those days where we watch a movie with the kids and try to spend some time with them.

Where is your favorite place you’ve traveled?

I think it’s Botswana. I did two trips to Botswana. I went on a cruise, and then I slept in the wild with no cellphone, no guns, no weapons. It was very interesting to sleep there and hear the animals close by with no fences.

What do you enjoy about living in Lexington?

It’s a very livable town. Very nice, very friendly. I like downtown. I think there are quite a few good restaurants and places to get a drink once and a while. It’s very green. Where I live I can bike through the backstreets, so that’s good.


Take a look at our video interview with Dr. Hildebrandt below. He speaks about what makes working Markey so unique.


Next steps:

Patients in UK HealthCare's first kidney donor chain.

Patients in UK HealthCare’s first kidney donor chain meet for first time

On Wednesday, we announced our first “kidney donor chain,” and patients in the the chain learned who their respective donors/recipients were.

Kidney donor chains, also called kidney paired exchanges, occur when a living kidney donor is incompatible with their intended recipient. The donor may agree to donate their kidney to a different patient, provided that their loved one receives a kidney from someone else.

When multiple pairs are involved, this causes a domino effect, with each recipient receiving a matched kidney from a stranger. That’s what happened here at UK HealthCare in June.

Eight surgeries were performed within 48 hours and four people were given their lives back.

Check out our infographic to see how it all worked.

infographic: UK HealthCare's first kidney donor chain

The chain was initiated by one altruistic donor who was willing to give her kidney to anyone who needed it: Nicki Coulter, a former nurse from Bloomfield, Ky.

“I used to be a nurse, and I just felt like this was something I needed to do,” Coulter said. “I was blessed with good health and a good support system in my family. So I decided to do it!”

Read more about this remarkable event at UKnow. And check out UK HealthCare’s Twitter feed for more coverage from Wednesday’s press conference.