Six Years After Transplant, She Never Let Chronic GVHD Hold Her Back
Summary: At 19, Xiaoling (pseudonym) underwent a related-donor haploidentical hematopoietic stem cell transplant for severe aplastic anemia and achieved remission. But chronic graft-versus-host disease (GVHD) after transplant affected multiple systems, including her lungs, skin, and joints, leading to a long and difficult recovery. With ongoing follow-up and care from Dr. Chuxian ZHAO's team at GoBroad Shanghai Zhaxin Hospital, she stayed on treatment, attended regular checkups, committed to rehabilitation, and also received supportive care combining conventional medicine and traditional Chinese medicine. Her chronic GVHD symptoms gradually improved. In 2021, she returned to university and successfully completed her studies. Now, nearly six years after transplant, she has started a job she wanted and is gradually returning to everyday life. Her experience traces the full journey from transplantation and chronic GVHD management to long-term recovery, offering encouragement to others navigating life after transplant: consistent treatment, rehabilitation, and a positive approach to life can open the door to a new beginning.
At 19, life should have been just beginning, full of possibilities. But in the year Xiaoling (pseudonym) entered university, everything changed: she was diagnosed with severe aplastic anemia, and her college life was abruptly put on hold. Yet there was still a path forward. In July 2020, she underwent a related-donor haploidentical hematopoietic stem cell transplant at GoBroad Shanghai Zhaxin Hospital, giving her the chance to begin again.
The road after transplant, however, was far from easy. Chronic graft-versus-host disease (GVHD) followed, bringing both physical and emotional challenges. Lung involvement left her short of breath with even light activity. Stiffness in the muscles and joints of her hands made simple everyday movements difficult. Changes caused by skin GVHD made it hard for her, for a time, even to recognize herself in the mirror. With professional care and steady support from the team at GoBroad Shanghai Zhaxin Hospital, Xiaoling kept going. She returned for regular follow-ups, adjusted her medications as instructed, and worked through rehabilitation under medical guidance, gradually regaining function step by step.
In September 2021, she returned to university and went on to graduate with excellent results. Chronic GVHD remained a long-term challenge, but she refused to let it stop her. With determination beyond her years, she kept working through each setback and slowly found her rhythm in life again.
There were still emotional ups and downs during treatment and recovery, and her body continued to adjust. But today, her chronic GVHD symptoms have improved substantially. She has also continued supportive care with Dr. Huixia LIU through a hematology clinic integrating traditional Chinese medicine, with the goal of supporting her longer-term recovery. Late last year, she also landed a job she had hoped for.
In her sixth year after transplant, the hospital prepared a special "graduation ceremony" for her. That day, Xiaoling received the first bouquet of flowers she had ever been given. Smiling, she said, "I can't believe this is the first bouquet I've ever received." Looking back, she does not avoid the what-ifs. "If I had never gotten sick, maybe my life would have been easier." Then she paused and added firmly, "But I don't think the version of me who never got sick would necessarily be stronger than the person standing here today."
In that moment, she had moved beyond more than illness - she had also grown beyond the person she once was. She chose to share her story not to dwell on hardship, but to offer a little light and courage to others still making their way through recovery.
Patient Conversation
Q1: When did you first realize that something might be wrong with your health?
A: When I started university, I moved alone to a city I didn't know. I wasn't used to the new environment or the pace of life. At first, I noticed purpura and a few small bleeding spots on my skin, but I didn't think much of them and assumed it was just a skin issue. Gradually, though, I became more and more tired. Climbing the stairs to my dorm would leave me completely out of breath.
One weekend, I stayed with my aunt in Shanghai. On Sunday morning, I got out of bed and suddenly everything went dark in front of me. My heart was racing, and I felt so weak that I could barely stand. My family rushed me to a nearby hospital. After a series of tests, I was diagnosed with severe aplastic anemia in October 2019.
When I first heard the diagnosis, I couldn't accept it at all. But I was already so physically weak that I hardly had time to process the sadness or fear. I just had to focus on the treatment in front of me.
Q2: Hematopoietic stem cell transplantation is a major decision. How did you and your family decide to go ahead with it?
A: My parents were extremely worried and took me from place to place looking for treatment. At first, I chose non-transplant treatment, but I remained very weak. We had heard that allogeneic hematopoietic stem cell transplantation could be an effective treatment for aplastic anemia, but the risks of transplant and the uncertainty around GVHD made us hesitant.
During that time, I met another patient around my age who had exactly the same type of disease. I chose non-transplant treatment, while he decided to go ahead with a transplant.
Two or three years later, I was still dealing with blood counts that kept fluctuating, while he had recovered and returned to normal life. That had a huge impact on me. I realized that transplant wasn't necessarily as frightening as I had imagined. What scared me more was the possibility of hesitating for too long and missing the best treatment window.
My non-transplant treatment also wasn't working very well. My blood counts stayed low and my quality of life was poor. In the end, my family and I made up our minds to proceed with transplantation.
In July 2020, I successfully underwent a related-donor haploidentical hematopoietic stem cell transplant at GoBroad Shanghai Zhaxin Hospital.
Q3: You dealt with chronic GVHD for a long time after transplant. What was that period like for you, and how did you get through it?
A: A successful transplant was only the first step. The GVHD afterward was the real test.
The first problem was pulmonary GVHD. For a while, even walking a few steps left me badly short of breath. Climbing stairs felt almost impossible. For someone who had once been energetic and active, that change was very hard to accept.
Then came stiffness in the muscles and joints of my hands. At its worst, I could barely make a fist, and even simple everyday tasks took a lot of effort.
I also developed skin GVHD. My skin became rough and uneven in color, and sometimes when I looked in the mirror, I barely recognized myself.
There were times when I felt completely overwhelmed. I kept asking myself, "Why me? Why do I still have to go through all of this after the disease itself has been treated?"
But every time I returned to the hospital for follow-up, the doctors and nurses encouraged me. They told me that recovery could take time, and that if I stayed with the treatment and rehabilitation, things could gradually improve.
With my family beside me, I began rehabilitation with the simplest movements and built up little by little. Progress was slow, but every small improvement gave me a little more courage to keep going.
Q4: You mentioned receiving ongoing care from Dr. Huixia LIU through a hematology clinic integrating traditional Chinese medicine. How did that support your recovery?
A: Recovery after transplant is a long process. Conventional medicine was very important for controlling GVHD, while I felt that traditional Chinese medicine also helped support my overall recovery.
Dr. Huixia LIU developed an individualized supportive care plan based on how I was doing. It included approaches such as Chinese herbal medicine and acupuncture, aimed at supporting my energy and overall physical condition.
After staying with the plan for a while, I could feel my condition gradually improving. I had more energy, I was sleeping better, and even the symptoms affecting my skin became much less noticeable.
For me, conventional medicine and traditional Chinese medicine were not an either-or choice; they could complement each other. During rehabilitation after transplant, this integrated approach helped make my recovery feel steadier.
Photo of Xiaoling taken in spring 2023
Q5: Returning to university, graduating, and finding a job have all been major milestones. Looking back, how do you think illness changed you?
A: Before I got sick, I was very driven. I wanted to do everything as well as possible and set very high standards for myself.
After getting sick, I learned to accept that I don't have to be perfect. I used to think life had to follow a fixed path - university, graduation, a job, marriage - and that I couldn't fall behind at any step. Illness taught me that life isn't a race. Everyone has their own journey.
During the years I was away from school, I watched my classmates graduate and start working. I definitely felt anxious and left behind at times. Eventually, I came to understand that everyone moves at their own pace, and I didn't need to measure my life against someone else's timeline.
When I finally returned to university, I appreciated the experience far more than I had before. Things I once took for granted became precious once I had lost them and then gotten them back.
Now that I'm working, I still take each day seriously, but I don't push myself as harshly as I used to. I allow myself to go a little slower, and I allow myself to have days when I don't feel my best. That's one of the most important things illness taught me.
Q6: You said, "The version of me who never got sick wouldn't necessarily be stronger than the person I am today." What does that mean to you?
A: That's genuinely how I feel.
If I had never gotten sick, I probably would have finished university on schedule, found a job, and lived a fairly ordinary, steady life. Things might have gone more smoothly, but I might never have developed the resilience or perspective I have now.
Illness made me face life and death, the limits of my body, and a long recovery while I was still very young. Those experiences were painful, but they also helped me understand earlier than many people my age what really matters and what I can let go of.
Now I value my health, my family, and every ordinary day much more. I also have a deeper sense of empathy. Because I know what it's like to be caught in the rain, I want to hold an umbrella for someone else.
That's why I say the version of me who never got sick wouldn't necessarily be stronger than the person I am today. It's not that I'm grateful for being ill. It's that the strength I had to build through illness is something an easy life could never have taught me.
Xiaoling also asked us to include this personal message:
I especially want to thank Dr. Chuxian ZHAO. Over the six years since my transplant, whenever anything has gone wrong with my health, she has been the first person I turn to. She always responds promptly, helps me understand what's happening, and points me toward the next step in treatment. Whether I'm dealing with another flare of chronic GVHD, an ordinary viral infection, or even moments when I'm anxious and emotionally overwhelmed, she always knows how to steady me. She is professional, calm, and incredibly patient. She gives me an enormous sense of security.
Another thing I really admire is Dr. Zhao's amazing memory. She knows my entire medical history and remembers the medications I've taken and so many details from every stage of treatment.
Dr. Zhao, you're my absolute hero. I love you!