Demanding Better Doctor-Patient Relations for Transplant Success

Leading, speaking, and helping others grow are the goals that define Terri Milton's life. As a liver patient and a dedicated advocate, she works hard to teach others about liver health. She helps doctors and patients understand the medical world. Whether she is speaking to five people or a crowd of 10,000, her mission is to make medical talk easy to understand.

An Unexpected Discovery

The health journey for Terri began back in 1998 when she learned she had a fatty liver. At the time, doctors told her not to worry about it. However, things changed quickly in 2017. During her gallbladder surgery, doctors discovered liver scarring caused by a condition known as MASH.

Because cirrhosis increases the risk of cancer, Terri began regular health checks. Her first scan in late 2017 looked fine. But just six months later, in May 2018, a new scan showed a small tumor. It was only about one centimeter long, but it was liver cancer. While it was still very early, her medical team began looking into the possibility of a liver transplant.

Facing New Challenges

The road to recovery was not a straight line. In the summer of 2018, Terri had a procedure called microwave ablation to destroy the tumor. Unfortunately, by November, the cancer returned. To make matters worse, doctors found another tumor in her colon.

In December, Terri had surgery to remove part of her colon and intestines. Thankfully, the colon tumor was not cancerous. Still, she had to heal from that major surgery before she could treat her liver again. She noted that her doctors needed better coordination during this time because managing two different health issues at once was very difficult.

In early 2019, Terri tried a treatment called TACE to stop the liver tumor. The treatment worked, but it caused a blood clot in a major vein. Because of this clot, she could no longer use that specific treatment in the future. She spent the next year recovering and taking blood thinners.

A Surprising Turn of Events

In April 2020, another tumor appeared. This time, the medical team planned a treatment to block the blood supply to the cancer. However, the tumor did not shrink; it doubled in size.

Doctors were confused until a specialist found something very unusual. The tumor was not getting blood from the liver like most tumors do. Instead, it had grown its own blood vessel to steal blood from her right kidney. Once the doctors found the source, they used a different treatment to destroy the tumor. Because the tumor had grown so large, Terri finally qualified for a liver transplant.

A New Lease on Life

On May 31, 2022, Terri received her transplant. She describes the experience as life-changing. To celebrate her third anniversary after the transplant, she even went skydiving!

While she is healthy now, she remembers the hardest parts of the journey. One major gap was the lack of support for caregivers. While Terri was sick, her husband was also struggling with his own health issues. He was so worried about being a burden to her that he hid his own pain. He eventually ended up in the intensive care unit for over a week. Terri believes that if the caregiver is not well, the patient suffers too.

The Importance of Mental Health

The emotional toll of cancer was heavy. Terri found comfort in a simple rule: she allowed herself to cry in the shower until either her tears dried up or the hot water ran out. When the stress became too much to handle alone, she asked her doctor for help. She began working with a therapist and a life coach to manage her mental health.

Terri wants everyone to know that mental health should be a standard part of medical care. Many patients are afraid to admit they are struggling because they worry it might disqualify them from getting a transplant. She encourages patients to be honest and doctors to ask better questions.

Today, Terri uses her voice to demand better communication between doctors and more support for patients' families. Her story is a powerful reminder that with the right help and a lot of courage, it is possible to navigate even the toughest storms.