Heart; Patient Stories; Transplant

A fourth chance at life: Susan's remarkable heart transplant story

Heart; Patient Stories; Transplant

Susan Liang is the ultimate survivor. Before age 50, she has already endured more health and personal challenges than most people face in a lifetime.

A viral illness attacked Susan's heart nearly 20 years ago, eventually leading to myocarditis and advanced heart failure. She survived a heart attack, stroke, and brain surgery before getting her heart transplant – during a pandemic and the threat of a hurricane. She rolled with all of this while caring for four teenagers, moving twice, losing a job, and attending college.

We're convinced Susan is unstoppable.

I first began treating her in 2017, when she was referred to the UT Southwestern Advanced Heart Failure Clinic at UT Health Northeast Tyler. That was a couple of years before we considered her for a heart transplant, which would be performed by Michael Jessen, M.D., Chair of UTSW’s Department of Cardiovascular and Thoracic Surgery. The entire transplant team felt fortunate to collaborate in Susan's care.

Recently, Susan took time out of her busy schedule to share her story of perseverance and personal empowerment, and express gratitude to her donor and her care team for the gift of life.

Susan's heart problems began after a case of the flu. The virus attacked and inflamed her heart – a condition called myocarditis. (Photos courtesy of Susan Liang)

'Are you aware that you have heart failure?'

Thanksgiving 2003 was the start of the two most turbulent – and blessed – decades of my 47 years of life. I was visiting family in Tyler for the holidays. The Monday before Thanksgiving, I came down with a case of the flu, which quickly progressed into pneumonia.

When I went to the emergency room, they did the standard chest imaging tests. The doctor looked a little puzzled. "Susan, did you know your heart is enlarged?"

I didn't. The doctor sent me home with some pneumonia medication and suggested I see a cardiologist when I returned home to San Antonio. I figured if I was healthy enough to go home, my heart was probably OK.

When I got home from my trip that Sunday, I blacked out in my living room. My husband came home to find me unconscious, holding our baby, Sierra, with our toddler, Joseph, standing over me and crying. I awoke in the emergency room to another surprise.

"Susan," the ER doctor said, "Are you aware that you have heart failure?"

I was floored. The flu virus had attacked and inflamed my heart – a condition called myocarditis, which turned into non-ischemic cardiomyopathy, a type of heart failure.

A closer look at Susan's failing heart

Six years, two moves, and three new drugs

I started taking medication for my heart that worked well for about six years. Following a move to Houston and a divorce, the kids and I returned to my hometown of Tyler.

My new cardiologist put in a pacemaker and started raising the possibility of a heart transplant. My ejection fraction (EF) – the amount of blood that was pumped out of the left side of my heart – was 23 percent. Normal EF is 50-70 percent.

But first, he recommended a new medication, which raised my EF to 28. That drug kept me going until 2017. We tried one more medication, which was designed to help with heart failure and high blood pressure – a problem I'd struggled with for years. The third medication briefly raised my EF to 32, but when it started to dip below 30 again, he suggested I start seeing Dr. Jennifer Thibodeau at the UT Southwestern Advanced Heart Failure Clinic at UT Health Northeast Tyler.

Based on my symptoms, Dr. Thibodeau suspected I had advanced heart failure.

She recommended I come to the Dallas offices for a heart catheterization and a cardiopulmonary stress test. My heart's blood output was low, which we already knew. But we found that the pressure inside my heart was very high. My body was trying to compensate for the low blood output by holding on to water and sodium, increasing my blood pressure.

We were able to control the pressure with medication, so I could hold off on considering a left ventricular assist device (LVAD) or transplant for a little longer. But the next three years would bring changes none of us could have imagined.

Susan, right, with three of her children: Bree, Aja, and Sierra

'The first of four times they'd save my life'

In 2018, my beloved sister, Lucy, passed away from organ rejection complications after a kidney transplant at another hospital. Her two teenage children, Aja and Ian, came to live with me.

Toward the end of 2018, I suffered a stroke caused by moyamoya disease – another condition I didn't know I had. Moyamoya is a neurological condition caused by the narrowing of the arteries at the base of the brain.

As a result, I had a cerebral bypass procedure at UT Southwestern in 2019, performed by Dr. Babu Welch, one of the country's top experts on the condition. Similar to a heart bypass, this brain surgery connected a blood vessel from outside my brain to one inside my brain, rerouting blood around the blocked artery. A cardiac anesthesiologist watched my vital signs, and they monitored my heart through the entire procedure using a catheter.

It was the first of four times they'd save my life.

While my brain recovered over several months, my heart health declined. In November 2019, I had recovered enough from neurosurgery to get my workup to join the transplant list.

Then … COVID-19 happened

Early in the pandemic, the hospital had to pause most services except emergency procedures. I'd gone through all the tests for the transplant, only to have to wait.

I was heartbroken.

Around the same time, the company I worked for let me go after my short-term disability ended, since I couldn't return to work. This was one of my lowest emotional points. I went home again to Tyler. Surrounded by family and friends, I collected myself – I was grateful to be alive, and I knew I had the support of a world-class health care team.

Unfortunately, another physical blow was around the corner. In May 2020, I went to the hospital in Tyler for symptoms of COVID-19. It was hard to breathe, and I was nauseated with cold sweats. I blacked out in my hospital room.

Two days later, I woke up in Dallas at UT Southwestern. I didn't have COVID-19. I'd had a heart attack accompanied by a seizure, and I'd slipped into a coma. I remained at UT Southwestern until late summer, awaiting a heart transplant.

Getting the call

I'd gotten steadily sicker over the summer – sick enough that I qualified for surgery under the rigorous pandemic protocols.

That whole summer, the heart transplant team checked on me every day – without fail. I never felt out of the loop or alone, even though my family couldn't be there because of COVID-19 safety restrictions.

On Aug. 11, I was placed on the transplant waiting list. Three days later, on Aug. 14 at 2 a.m., Dr. Thibodeau called my room with the news we'd been waiting for – a donor heart was on its way to Dallas for me. I'd get my transplant later that day.

When I hung up the phone, I felt a flood of emotions. Sadness that someone had to die for me to get another chance to live. Excitement that my chance had finally come. Fear that I was having yet another surgery, even though I trusted my UT Southwestern doctors completely.

But mostly, I felt alone. I had always pictured that Lucy and mom would be with me in this moment, surrounded by the kids. I laid awake until mid-morning, thoughts racing.

Finally, I drifted off to sleep and when I woke up, there was a tube in my mouth.

'I'd slept through the most exciting part!'

They'd put me under anesthesia while I was sleeping, and when I woke up I learned that the transplant was complete. I'd slept through the most exciting part!

Even though my mom was 2 1/2 hours away, the transplant team kept her in the loop, checking in every few hours. That meant the world to us. During my sister's kidney transplant at another hospital, the doctors didn't contact my mother for two whole days.

When I woke from anesthesia, the transplant nurses were there and asked how I felt. I gave them a thumbs up, and two hours later, my breathing tube was removed and recovery began.

None of my family could visit because of the pandemic restrictions, and the isolation led me to a new goal: Working hard to get home to the kids.

Dr. Justin Grodin, who worked with me after the transplant, told me point blank: "If you want to get out of here and go home, you have to start walking. It will speed up your recovery."

The transplant doctors were so encouraging. The nurses quizzed me on my new medication schedule and diet, and they never made me wait for help when I wanted to walk. The team helped me streamline my recovery so I could get back home to the kids. I think they were surprised at how fast I recovered! I didn't even have to go to cardiac rehab.

I was discharged on Aug. 27, less than two weeks after my transplant – the same day Hurricane Laura was gearing up to slam through Texas and Louisiana. Fortunately, Tyler was spared and Mom made the journey to Dallas and took me home.

'I couldn't be more blessed'

Nine months after my transplant, I feel really well. I'm engaged to a wonderful man, Larry. And during my recovery, I decided to go back to college – I'm working toward an associate degree to become a medical office manager.

I visit UT Southwestern once a month for cardiology follow-ups.

This spring, I got a kit in the mail from the transplant coordinator team. Inside was a gift – the opportunity to connect by mail to my donor's family.

How will I convey so many emotions in one message? I've been working on writing the family a letter, and it's almost ready to mail. I hope they will want to meet me someday.

Through every crisis, every high and low, my transplant team and cardiologists proved that they truly care about me. No matter who I saw in the office, every doctor was well informed about my condition and my history. They even called to remind me to get my COVID-19 vaccine. I feel truly blessed to have found my way to UT Southwestern.

Ongoing support for transplant patients

Susan’s story is truly inspirational. It has been such a pleasure for our team to care for her and help her to get a new heart and a new chance at life.

On average, donor hearts last 11-12 years after transplant. At UT Southwestern, our median is 13-14 years, and some of our patients are doing well 20 years after their transplant. There's no crystal ball – we never know how long a donor heart will last, but we always hope for the very best for each of our transplant patients and provide them with all of the care and support they need for the best outcomes.

To visit with one of our specialists, call 214-645-8300 or request an appointment online.