Long life and love comes true for patient with chronic aplastic anemia

Reporter's note:

Seventeen years ago, I sat down with Zhang Jiong, a man whose life was a poignant blend of adversity and unwavering hope. Diagnosed with chronic aplastic anemia, Zhang's story was not just about surviving; it was a lesson in living with heart and courage.

Now, as the calendar pages turn to 2024, I reconnected with Zhang on the eve of a milestone – the 20th anniversary of his marriage to Li Suyun, a union that many believed would be short-lived.

This interview transcends mere updates on his health and endeavors; it's a celebration of love, endurance, and the human spirit. As we revisit Zhang's journey, we uncover not only the struggles and triumphs of a man who has danced with fate but also the tender narrative of a life lived with deep and unyielding love.

In the warm glow of a winter afternoon, Zhang Jiong, 52, sits with a gentle smile that belies the tumultuous journey he has traversed. Labeled a "Time Bomb" due to his precarious health, Zhang's life seemed destined for a tragic end. Yet, against all odds, he sits here today, not just as a survivor, but as a beacon of unwavering hope and resilience.

As he reflects on the past several decades, his eyes, mirroring a life filled with both pain and triumph, tell a story far more profound than words could capture.

"I've been stable these years," he says, his voice a calm river flowing through the rugged landscape of his life with chronic aplastic anemia, a precursor to leukemia that has shadowed him since a misdiagnosed treatment at 6 years old.

"Perhaps I am so far the longest-living patient with this condition," he muses.

Despite the relentless cycle of the disease, Zhang's spirit remains undiminished. "It recurs, like stock prices, up and down. I've had to constantly seek new medications from year to year due to resistance," he says.

Zhang's childhood was marked by vulnerability and fear, grappling with the twin threats of bleeding and infection. He recalls an incident in primary school, a nosebleed so severe it led to an emergency hospitalization. "After a blood transfusion, I felt strong enough to take on a tiger, but that vigor would wane in days," he reminisces.

The invisible and spontaneous bleeding was his constant nemesis – during conversations and in his sleep, often occurring without any warning. He might suddenly feel blood trickling from his ears or find his mouth bleeding. More hidden and dangerous were instances of subarachnoid hemorrhage: invisible losses of blood that carried unpredictable risks.

Sometimes, Zhang wakes at night to find damp spots on his pillow, silent indicators of bleeding probably from his ears or nose, reminding him of his body's fragility. There is also unseen bleeding, such as in his stomach, which are often more terrifying than visible wounds, as they are harder to notice and control.

Due to an incorrect dosage of chloromycetin following dysentery at six years old, the medication hindered the development of his bone marrow and impaired its ability to produce blood – a condition known as chronic aplastic anemia.

This resulted in significantly reduced counts of platelets and white blood cells in Zhang's body, leading to severe limitations in physical activities such as running, jumping, or prolonged walking. His body's inability to generate sufficient blood necessitates regular transfusions to sustain his life.

"It's best to think of it as a chronic illness, like high blood pressure or diabetes," he says, with a voice of acceptance and black humor. After years of battling the disease, he has come to terms with his health situation, viewing it not as a relentless enemy but as a constant companion that needs careful management.

Zhang now administers a nationwide online support group, spanning social network platforms like Baidu post bar, Xiaohongshu, Douyin, and Bilibili, where he connects with hundreds of fellow patients. They seek his advice on understanding lab results and medication suggestions. "Having lived with illness for so long, I feel obliged to help those newly diagnosed," he says.

Zhang understands the panic and confusion that a new diagnosis can bring, leading many to seek hasty treatments. He advocates following guidelines by the World Health Organization, emphasizing that immediate bone marrow transplantation, often considered by many, is risky and should be a last resort.

"I've seen too many patients sell their homes to incur huge debts for the surgery, only to lose their lives in the end," he says.

Leading the group for over six years, Zhang has received both gratitude and criticism, and even had his accounts reported and groups shut down. "Because I advise against immediate bone marrow transplants, it conflicts with the interests of some people involved in the industry, leading to frequent reports against me," he explains.

His role extends beyond mere advice. Faced with a health crisis for himself and his fellow patients, Zhang exhibits determination and bravery akin to Ron Woodroof from the movie "Dallas Buyers Club." While Woodroof fought for the rights of AIDS patients, Zhang's battle is for those suffering from chronic aplastic anemia.

He sourced a cost-effective steroid medication that was unavailable in Shanghai pharmacies due to its low profitability. Determined, Zhang traveled alone to the drug's manufacturer in the Guangxi Zhuang Autonomous Region.

There, he met with the sales manager, forging a connection that would become crucial for many. "I made regular inquiries about where the drug was distributed near Shanghai," he says.

Upon learning that the medication was available in Hangzhou, Zhejiang Province, Zhang took on the responsibility of not just his own needs but those of his entire support group.

He collected their prescriptions and personally coordinated the purchase of the medicine. "But I made sure that all the money was directly transferred to the pharmacies," he clarifies. "I didn't want to handle the finances myself, to avoid any legal complications."

Zhang's current regimen is a careful balance, a cocktail of medications aimed at maintaining equilibrium in his fragile health. "I'm on immunosuppressants now," he says. "They suppress everything – the good and the bad – in an effort to stabilize my blood. It's about keeping everything in balance, slowing down my metabolism regardless of the cell type."

His daily routine includes taking three different Western medicines and one traditional Chinese medicine. This combination is the result of years of trial and error, a testament to his enduring struggle with his condition. "If these medications stop working, it means my body has developed resistance," Zhang says. "Then, I'll have to start the search for new drugs all over again."

Despite the challenges of managing his health, Zhang's life is illuminated by the joys of fatherhood. His elder daughter, 16 years old, is a ballet prodigy and Shanghai's youngest registered soccer referee. His younger daughter, 6 years old, adds further brightness to his life.

Zhang boasts a collection of vocational training certificates in fields ranging from computer and automotive repair to baking, pastry, and nutrition. "My wife often jests with me, 'It's great being married to you; I never have to worry about cooking'," he says with a sweet smile.

Their love story began in the ward of Changhai Hospital, where his future wife Li Suyun worked as a nurse in the hematology department. She met Zhang when she was just 20, and after four years of courtship, they married.

Her parents only had one simple, earnest request for him: "Just be kind to our daughter, and live a little longer." It seems that Zhang has greatly exceeded this sincere appeal.

Li first saw Zhang during a critical moment, as he lay in a hospital bed, suffering from stomach bleeding caused by a new medication. He had to spend 12 days in bed, with doctors issuing critical condition notices everyday, a reality grimly joked about by Zhang, "I have a drawer full of these notices, like a deck of cards."

It was during this time that their connection deepened. Despite being bedridden, Zhang's cheerful demeanor and engaging conversation struck a chord with her. "She once told me that the first time she saw me, I was wearing glasses, bedbound, but still so cheerful," Zhang recalls.

The nurse blushed every time she saw him, and Zhang, noticing this, asked directly, "Do you like me?" Her affirmative response led to their blossoming relationship.

Their dates were modest, with her often footing the bill. "Back then, my health was poor; I had no job, no money," Zhang says.

Their dates were simple yet intimate affairs, journeying on Bus No.937 from Wujiaochang area to Changhai Hospital. There, seated side by side, they would shared dreams and comfort with the hum of the city passing by.

In 2004, amidst the challenges and uncertainties, they wed in a union of love and courage. Soon after, they cautiously anticipated the arrival of their first daughter. Zhang stopped all his medication, a pause filled with hope and apprehension.

"I was in relatively good shape back then, but my wife faced immense pressure," he shared. The head nurse and doctors in her department couldn't help but express their concern. As they had witnessed so many lives lost in front of them, they questioned her, "You've seen so much death, and still, you chose to love, marry, and have a child with him?"

Yet, defying all doubts and fears, their first daughter was born healthy and vibrant, and Zhang's condition remained stable.

However, the birth of their second daughter was not as smooth and fortunate as the first. He halted his medications again in preparation for conception, a decision fraught with consequences. The year of 2017 saw the birth of their second daughter, still healthy, but it marked the onset of a more challenging health period for Zhang.

The halt in medication set off a cascade of complications. "In the first year, I could still climb stairs, but then my health started to deteriorate rapidly," Zhang recounts. Heart conditions, ear and scalp beeds became frequent, signaling severe relapses of his condition.

By 2018, while his wife juggled caring for their newborn and her responsibilities, Zhang found himself in and out of the hospital four times, and by 2019, that number had escalated to 11 visits.

There were moments of seizures so severe that his wife would rush him to the emergency room for urgent transfusions, each visit leaving the doctors doubtful of his survival for another week.

He has had deep conversations with their elder daughter about death, about the precariousness of his life, and the importance of living well regardless. The girl, mature beyond her years, became an integral support. "Whenever I'm rushed for emergencies, I tell her to listen to her mother," Zhang shares, his voice cracking slightly. "She understands, tears streaming down as her mother also weeps."

With a contemplative gaze, Zhang adds, "But if I were to pass now, I would be content. I've earned money, secured a home, and my parents are still in good health. I feel profoundly grateful."

Though his body was frail, it seemed that fortune favored Zhang in his financial endeavors.

After university graduation, Zhang attempted the conventional work life at an advertising agency, clocking in from 9am to 4:30pm. But after just one day of enduring the grueling sitting routine, his body protested, yearning only for rest. The following day, he had no choice but to resign.

The year of 2006 marked a turning point. With his health somewhat stabilized, he ventured into entrepreneurship, opening a computer repair business right from his home. He distributed flyers in the nearby neighborhoods, offering repairs.

During this time, Zhang unwittingly caught the nation's entrepreneurial wind. He invested in a second-hand motorcycle to transport computers needing repair or assembly to bustling electronics hubs like Saige Plaza and Buynow. The markup he earned from the repairs done by others was considerable, and soon, he found himself profiting significantly from the venture.

The business grew, and he eventually rented a booth at the computer plaza and hired staff, becoming a small business owner himself. At the peak of his enterprise around 2006 and 2007, he had eight employees.

"The money I earned went toward my medical expenses, our new home, and supporting my newborn daughter," Zhang says.

However, as the online marketplace Taobao emerged, it shook the industry, gradually eroding the profits. By around 2013, Zhang closed his shop and warehouse.

In 2014, celebrating a decade of marriage, Zhang, along with his wife and daughter, treated themselves to a two-week European tour.

Now, it's their 20th wedding anniversary. "My wife has been through more than most could bear; I owe her a lot," Zhang says.

For this special milestone, he plans a heartfelt tribute - to seek out and express his deepest gratitude to every individual who has been part of their story, a journey of perseverance, love, and shared humanity.

He once queried his wife about her decision to marry him. Her response was as profound as it was touching, "Marriage, to me, is a gamble. I know that being with you might lead to an abrupt goodbye. Yet, I chose to bet on us, to bet on love."

Here is the link for the story in 2006:

https://archive.shine.cn/news2007/20060901/290805