She just didn’t want her students to see her crying.
Nine years into her elementary school teaching career, LaKendra Butler was ready for anything. A random curious question, a student forgetting their homework, even the occasional fall on the playground. What she had never expected was the sudden excruciating pain she was now feeling in her side while teaching her class – pain so intense that she could barely walk to her desk.
“Teaching children has always been my greatest passion, it is what makes my heart so full,” reflects LaKendra. “I never imagined a situation where I wouldn’t be able to do it, or worse, have a chronic illness that would threaten my very life.”
LaKendra was quickly rushed to a local hospital not far from her home in Richmond, Virginia. A full range of tests revealed that her liver enzymes were highly elevated, prompting her to undergo an immediate biopsy. It was here that a gastroenterologist revealed an unsettling diagnosis.
Teaching children has always been my greatest passion, it is what makes my heart so full, I never imagined a situation where I wouldn’t be able to do it.
“They told me I had a liver disorder called primary biliary cholangitis or PBC,” recalls LaKendra. “The name itself was a lot to take in, it was very overwhelming. But when the doctor said it was a rare autoimmune disease where the immune system relentlessly attacks the liver’s bile ducts, and that it had no cure, it terrified me. I was totally devastated.”
Because the liver is responsible for filtering and removing toxins from the body, any threat to its functioning calls for a swift resolution. But without a known cause or cure, her doctor’s attention turned to maintaining her through medication.
Within three years, however, the opposite proved true. She experienced extreme fatigue and jaundice as well as a side effect known as edema, or severely swollen feet.
“The one positive thing that I tried focusing on was that I was told my type of PBC was early onset. At stage four, you have liver failure and need a transplant. I was just really grateful my condition was still in its infancy,” remembers LaKendra. “But, unfortunately, I was misdiagnosed.”
While initially told her condition was stage 1, further appointments with doctors in Virginia revealed that LaKendra had been misdiagnosed; that is, she should have been considered stage 2 at the time of her first evaluation. On top of that, in the time since her disease started, she was told her condition had advanced into cirrhosis, or liver failure, and that she would need a new liver to survive.
With her health outlook growing more uncertain with each passing day, LaKendra knew she needed a new plan if she wanted to get better. That’s when one of her doctors recommended a hepatologist at University of Michigan Health, Robert Fontana, M.D., who had expertise in advanced liver disease.
“I’m originally from Saginaw, Michigan,” says LaKendra. “So the idea of coming back to Michigan to be with family while getting help was very appealing.”
In October of 2020, LaKendra drove the 600 miles back home to Michigan from Virginia and met with a new team of doctors at U-M Health. And the difference was immediately clear.
I was surrounded by such an amazing team right from the start, it was such a well-oiled machine.
“I was surrounded by such an amazing team right from the start,” remembers LaKendra. “It was such a well-oiled machine. Dr. Fontana and his team were incredibly thorough! I was so impressed by how they checked every single box and made sure absolutely nothing was left undone. As a patient who had experienced many different medical teams in the past, this was very comforting and reassured me that choosing U-M Health was the best decision.”
While LaKendra was relieved to be in the hands of the nation’s leading experts, her PBC had advanced to a point that concerned her new team.
“After conducting an MRI and many other tests, our team confirmed that LaKendra indeed had stage 4 liver failure and would need a transplant. She was put on the transplant list right away because her condition was worsening,” recalls Dr. Fontana. “She essentially got here right in the nick of time.”
The next eight months of LaKendra’s life became not only a waiting game, but a constant struggle to simply deal with her failing body.
“I was struggling to walk most of the time. Riding motorized scooters at the grocery store became my new norm. I fell a few times and had to have stitches. My jaundice got worse, and my feet swelled up even more. And the whole time, there were a few false alarms where I was told a liver was available and then it would fall through. So the constant worry of wondering if I’d get a new liver was always present. I’m not going to lie, it was a really hard time,” says LaKendra.
What also complicated matters was the type of liver LaKendra would need. Many liver transplant recipients are eligible to receive a split-liver transplant – that is, a portion of a liver from a living donor that is then able to regenerate in the recipient’s body. Due to the severity of LaKendra’s illness, she needed a whole-liver transplant from a deceased donor.
But waiting for this type of liver can take some time because whole-organs are less commonly available and must match the recipient’s blood type as well as be the same general size as the recipient’s current liver.
On top of the realities of waiting for the right liver to become available, the transplantation process can also be emotionally challenging. In the midst of her struggle, LaKendra was grateful to find that U-M Health offered her a number of resources to help her cope with the mental component of her disease.
“Dr. Scott Winder was amazing,” says LaKendra, referring to the U-M Health transplant psychiatrist she met with several times to counsel her throughout her ordeal. “When I started to lose hope, I thought about writing letters to my loved ones to basically say goodbye to them. But Dr. Winder helped me to change my mindset. He told me to write them ‘thank you’ letters instead and that really helped me to rally through the physical and mental pain I was having.”
LaKendra was also given a peer mentor to speak with; that is, someone who had undergone a liver transplant previously and who could truly offer the first-hand insights she needed.
When I started to lose hope, I thought about writing letters to my loved ones to basically say goodbye to them. But Dr. Winder helped me to change my mindset. He told me to write them ‘thank you’ letters instead …
“Having a peer mentor was also a game changer,” says LaKendra. “The U-M transplant social work team did a fantastic job matching me up with the perfect peer mentor. She and I had very similar experiences. That brought me hope and so much comfort during the most difficult days. U-M Health literally thinks of everything.”
Amidst her physical deterioration and the constant ups and downs of waiting for a donor, further turmoil found its way to LaKendra in July of 2021. A series of tests revealed that LaKendra’s MELD score was now very high. The MELD score predicts a person’s risk of death from chronic liver disease. LaKendra’s score was 30 out of a maximum of 40. She was admitted to U-M Health’s emergency room for further review.
Within two days, the score elevated to 34. That is when LaKendra’s transplant surgeon, Seth Waits, M.D. made a major decision in her care.
“It was clear to me that LaKendra would need a transplant within 48 hours or she might not live,” says Dr. Waits. “I told her she was not leaving the hospital without a new liver.”
Fortunately, timing and the entire team was on LaKendra’s side. Less than 48 hours later, the call she had spent months waiting for finally arrived. Now with a score of 38 out of 40 on the MELD scale, LaKendra was told a liver matching her size and blood type had become available and she was rushed into surgery.
The doctors and nurses and the entire transplant team … will always have a special place in my heart.
Less than six hours later, LaKendra’s family was informed that the surgery was a success – the transplanted liver was working and there were no complications.
It has been five years since LaKendra first experienced that terrible pain in her classroom. Today, at 36 years old, she is thriving and starting to resume the full life she had been living prior to the onset of her PBC, including getting back into the classroom to teach. And she’s even going to mark the one-year anniversary of her transplant with a family trip to Hawaii. Something she could not have imagined just a few years ago.
“I just love, love, love everything about Michigan Medicine,” says LaKendra. “It would take hours for me to list every single thing I love about this program. They are top notch in every aspect of medical care. But what truly sets them apart from the rest is the love and compassion they showed me every single day of my journey there. I know they always had my best interests in mind. The doctors and nurses and the entire transplant team are the epitome of medical professionals and they will always have a special place in my heart.”
“LaKendra had a remarkably difficult disease that caused her liver to fail, but the fact that we could get her a new liver and make sure her outcome was successful is a process we’ve spent decades improving,” says Dr. Waits. “And it’s what makes our jobs so rewarding.”
Do you have a remarkable patient story? A moment of breakthrough or discovery? We’d love to hear about it!