Diagnosed with High-Risk MDS at 53, She Marks One Year of Recovery After a Haploidentical Transplant
Summary: In 2025, 53-year-old Ms. Jiang (pseudonym) sought medical care after developing difficulty walking and a persistent roaring sensation in her head. She was ultimately diagnosed with myelodysplastic syndrome (MDS), subtype MDS-IB2, and was assessed as high risk. After a comprehensive evaluation, she underwent a related haploidentical allogeneic hematopoietic stem cell transplant in July, with her son as the donor. Her blood production recovered successfully after transplant. At the one-month follow-up, she was in complete remission with 99.49% donor chimerism. Recovery was not completely smooth, and she experienced an infection after leaving the transplant unit. Now one year post-transplant, her immune system has reconstituted well, she is off immunosuppressive therapy, and she has shown no signs of graft-versus-host disease (GVHD). Looking back, her message to other patients is simple: trust an experienced medical team, follow the treatment plan, and do not relax infection precautions too early just because you start feeling better.
In June 2025, 53-year-old Ms. Jiang went to the hospital after developing difficulty walking and a persistent roaring sensation in her head.
After a routine blood test showed abnormalities, she underwent a bone marrow examination and was ultimately diagnosed with myelodysplastic syndrome (MDS).
The diagnosis came without warning. At first, she even asked her doctor, "How long would I have if I did not get treated?" But when the doctor told her that the disease could be treated, her fear gradually gave way to a clearer thought: if there was a treatment option, she would give it her best. Based on her age, disease subtype, and risk assessment, the medical team recommended proceeding with allogeneic hematopoietic stem cell transplantation as soon as possible.
In July 2025, Ms. Jiang underwent a related haploidentical allogeneic hematopoietic stem cell transplant at GoBroad Shanghai Liquan Hospital, with her son as the donor.
Neutrophil engraftment was achieved on day +20. At the one-month follow-up, her disease was in complete remission, with donor chimerism of 99.49%. She is now one year post-transplant.
Ms. Jiang has achieved good immune reconstitution, has discontinued immunosuppressive therapy, and has shown no signs of graft-versus-host disease (GVHD). She has returned to a familiar rhythm of life and is willing to share what she has learned over the past year with other patients preparing for transplant.
Why Did She Choose Hematopoietic Stem Cell Transplantation After an MDS Diagnosis?
Q: How did you first realize something was wrong?
A: In June 2025, it started with difficulty walking. Then I developed this constant roaring sensation in my head, so I went to the hospital. My blood test was abnormal, and the doctor asked me to have a bone marrow examination. That was when I was diagnosed with myelodysplastic syndrome.
I had always been healthy, so it came completely out of the blue. I felt lost when I was first diagnosed. I even asked the doctor how long I might live if I chose not to be treated.
The doctor told me the disease could progress quickly without treatment. My younger sister was so frightened that her legs went weak. In the end, I was the one helping her walk out of the consultation room.
Later, my son started looking up information online and learned that hematopoietic stem cell transplantation could offer better treatment outcomes for some people with MDS. He told me, "Mom, this can be treated. Let us go for the transplant."
After we came to the hospital, the doctors looked at my age and the details of my disease and recommended that I have the transplant as soon as possible. Hearing the words "it can be treated" actually made me feel calmer. My thinking was very simple: if the doctors said there was a way forward, then I would take it.
Before Transplant, the Most Important Thing Was Understanding the Risks
Q: The doctors explained many risks and precautions before transplant. Were you frightened?
A: We came to GoBroad Shanghai Liquan Hospital in July 2025. Before the transplant, Dr. Su Li sat down with me and explained the entire allogeneic hematopoietic stem cell transplant process in detail, including what might happen at different stages.
The informed consent documents were a thick stack.
To be honest, I may not have understood every medical detail. But what mattered most to me was that the doctors explained in advance what could happen. That way, when something did happen, I was less likely to panic.
For example, Dr. Li told me that I might develop a fever while my blood counts were recovering. And sure enough, I had a low-grade fever for several days when my cells started to come back.
Because the doctors had already explained it, I paid attention to the fever, but I was not especially scared.
For me, having a general understanding of the transplant process and knowing how the doctors would respond was much more reassuring than staring at every test report and worrying about what each number might mean.
In the Transplant Unit, What Reassured Me Most Was Knowing the Doctors Knew What to Expect Next
Q: What stands out most from your time in the transplant unit?
A: I spent about a month in the transplant unit. After the stem cell infusion, I got anxious when my white blood cell count still had not risen by day 12. I asked Dr. Jun Zhu, "Why is it still not going up?"
Dr. Zhu told me to wait another two days. If it still had not risen, they would consider medication to stimulate white blood cell recovery. Then on day 14, my white blood cell count really did start to rise.
I was amazed and asked him, "How did you predict that so accurately?" He joked, "I wrote this script - I am the director." I still remember that line today.
For patients, so much of this is happening for the first time, and every change in a blood count can be stressful. But experienced doctors recognize the patterns. They know when it is appropriate to watch and wait and when it is time to intervene.
That kind of clinical judgment gives patients a real sense of security. Over time, I came to feel that I did not need to understand every line of every report myself. It was more reassuring to follow the treatment plan, cooperate with the team, and ask my doctors whenever I had questions.
Feeling Better After Leaving the Transplant Unit Does Not Mean Infection Precautions Can Stop
Q: During recovery after transplant, what do you think patients need to pay the most attention to?
A: At first, things went quite smoothly when I moved from the transplant unit to the general ward. I felt so well that day that I thought I could walk there myself, but the care staff still insisted on taking me in a wheelchair.
Looking back, I was a little too relaxed. I felt well, I had plenty of energy to talk, and wearing a mask was uncomfortable, so I took it off. I also walked around the hallway and used the elevator by myself.
I developed an infection soon afterward. It took more than ten days to get through it, and for at least a week I could barely even drink water. So if I could give one piece of advice to patients who have just left the transplant unit, it would be this: feeling physically well does not mean your immune system has recovered.
Especially early after leaving the transplant unit, do not relax precautions such as masking, environmental hygiene, and food safety simply because you feel better. Around day 100 after transplant, I wanted to return to my hometown in Jiangxi.
Dr. Li agreed that I could go home, but asked me to come back for follow-up every two weeks. He also recommended having a family member drive me to reduce infection exposure during the journey. I really appreciated that approach.
The doctors did not simply tell me, "You cannot do this" or "You cannot do that." Instead, they tried to help me live as normally as possible while still keeping safety first.
After Returning Home, Food Safety, Hygiene, and Regular Follow-Up All Matter
Q: What do you pay the most attention to in everyday life at home?
A: For me, the two most important things are keeping food clean and keeping the living environment hygienic. We have a little child at home who is just over one year old.
At first I was so weak that I could not even pick the child up. Around nine or ten months after transplant, I gradually became strong enough to hold him again. He likes to run into my room at night, so I ask him to bathe and get clean before coming in.
I am just as careful with food. After all, it goes directly into my body, so I do not take chances.
Of course, exactly how strict you need to be and when precautions can gradually be relaxed should always be discussed with your treating doctor. Everyone recovers at a different pace, so you cannot simply copy another patient's experience.
One Year After Transplant, She Feels Life Is Gradually Coming Back
Q: After going through a serious illness, do you feel different from the person you were before?
A: People often say that a serious illness changes you completely. But I still feel like myself. Sometimes I even feel as though I was never sick.
I also chat with other patients in support groups now. If someone asks about my experience, I share what I know. The main thing I want to tell them is very simple: there will be frightening moments and setbacks during treatment, but do not let one difficult stage convince you that there are no possibilities ahead.
From diagnosis through transplant, I never cried because I was afraid. Now, when I do tear up sometimes, it is more often because I am moved by the people I met and the help I received along the way.
Illness is a difficult chapter in life, but it is not the whole story. Once you get through that chapter, life still moves forward.
Q: Does every patient with MDS need a hematopoietic stem cell transplant?
No. Not every patient with MDS needs hematopoietic stem cell transplantation.
The decision depends on multiple factors, including the MDS subtype, risk category, age, overall health, and whether a suitable donor is available.
Ms. Jiang had MDS-IB2 and was assessed as high risk, so her medical team recommended allogeneic hematopoietic stem cell transplantation.
Q: Can a haploidentical family donor be used for an allogeneic hematopoietic stem cell transplant?
For some patients, a related haploidentical donor can be used for allogeneic hematopoietic stem cell transplantation after a comprehensive evaluation.
Ms. Jiang's son served as her donor, and she successfully achieved hematopoietic reconstitution after transplant.
Q: Why is infection prevention still so important after leaving the transplant unit?
Leaving the transplant unit means that blood cell production has begun to recover, but immune recovery usually takes much longer.
So even if a patient already feels much stronger and more energetic, masking, food safety, environmental hygiene, and scheduled follow-up remain important during the recovery period recommended by the medical team.
Q: If a patient reaches complete remission after transplant, does that mean no further treatment is needed?
Not necessarily.
For some high-risk patients, doctors may recommend maintenance therapy and long-term follow-up based on the risk of the underlying disease and the patient's recovery after transplant.
Ms. Jiang started decitabine maintenance therapy three months after transplant and continues to receive long-term follow-up as planned.