The wound of "invisible" is repeatedly bleeding

Author:Look at the think tank Time:2022.08.11

For more than two decades, in the body of Li Haijie's body, those "invisible" places were repeatedly bleeding.

At the age of 4, he was diagnosed with type A with hemophilia, a hemophilia, a hemophilia, a hemophilia, a hemophilia, and a hemophilia. At that time, he didn't know that he still liked to run and jump. Only his mother Yao Lixiang followed him nervously, fearing that the child would fall.

Yao Lixiang and her husband closed the tailor shop in Shanghai and took the child to Baoying County, Yangzhou, Yangzhou. Later, she did 15 years of accompanying mother.

This disease was a sword hanging above their heads. At the age of 11, Li Haijie was hit by a car on the road, and then he could only sit in a wheelchair to school.

Yao Lixiang recalled over the years. It seems that there are many days in seeking medical treatment and borrowing money, but the difficulty of life is not the most unforgettable part. She also had to confuse her in turn.

Last summer, Li Haijie received a doctoral notice from the Department of Philosophy of Peking University. This is his favorite professional and dream school. The family is very happy.

After finishing the graduation procedures of the alma mater Nanjing University, they plan to return to their hometown first. Unexpectedly, Li Haijie was dissatisfied with the soil and water, and suffered from acute gastroenteritis -because of repeated bleeding throughout the year, a more than ten centimeters of "fake tumors" formed at his peritoneum, which caused severe infection this time.

The doctoral admission has to be delayed, and the path to seek medical treatment is still continuing. This time, the danger is unknown.

Wen | Mingzhang Intern Ding Chaoyi Chen Lei Zhang Li Li Lin Yaxuan Li Mingzhi

This article is reproduced from the WeChat public account "Surging News" (ID: ThePapernews). The original first was released on August 11, 2022. The original title was "Invisible" wounds, repeated bleeding, which did not represent the viewing think tank viewpoint.

"Long" surgery

On January 28, a three hospital in Shanghai.

Yao Lixiang, who was in his early fifties, had a pale hair and anxious, standing at the door of the operating room and waiting for his son's surgery to end.

Six hours later, the door opened, and Li Haijie was pushed out by several doctors. After Yao Lixiang had no time to look at it, he was pushed back to the intensive care unit. It turned out that Li Haijie had caused infection after surgery, and suddenly shocked, and the intensive care unit had been busy.

At that moment, Yao Lixiang felt that his heartbeat stopped. Brother Yao Jian remembers that the sister's face was ashamed, and she didn't say a word.

Orthopedics, blood department, intensive care department, etc., seven or eight doctors, bright lights, surgery knives ... Under the strong rescue of doctors, there was finally a turnaround.

In late March, Yao Lixiang thought of the operation and felt thrilling. The doctor told her that the fake tumors in Li Haijie's abdomen had been removed, but due to the long time and the large infection area, the second debridement surgery was needed.

However, soon the epidemic broke out, the city entered a state of control, and the surgery had to be delayed.

In the next few months, Li Haijie lived in the ward. Yao Lixiang closed the rental house near the hospital. Until August 6, Li Haijie was discharged.

"Cage" and "Light"

In an article, Li Haichang wrote that fate is like a dark cage, which tied me firmly. In the darkness, the love and encouragement of my parents gave me the courage and brought me the first rays of light ... I walked into the school, where I got the second light of my life here.

In the fall of 2014, accompanied by his mother, Li Haijie studied the Department of Philosophy of Nanjing University. The school specifically assigned them a single dormitory and arranged Yao Lixiang to work in the school's medical office.

Every day, Yao Lixiang pushed his son to class, and then went to the classroom to pick him up to the dormitory. Li Haijie finished undergraduate and master's degree at Nanjing University, and took it as a home.

In October 2019, Li Haijie took a photo with his father at Nanjing University Library.

Yao Lixiang felt that although his son couldn't walk freely, he was very happy during the days of Nanjing University.

Students often come to pick up Li Haijie to participate in the class activities. Li Haijie will also organize the same master and brother to teach them to learn Japanese. In the impression of Master Tan Jingyang, Li Haijie was very cheerful.

Yao Lixiang also found that she had grown up since she was a child. Every year, she has a meal for Li Haijie. When she is back late at night, Li Haijie will pour a glass of water, and the temperature is just right ... slowly becoming him to take care of her.

During the undergraduate graduation, Li Haijie was under the first grade of the year. After graduating from a master's degree, he applied for a PhD in Peking University.

Before the doctoral admission, Peking University asked the master Xinyi to ask Li Haijie's physical condition. Fu Xinyi replied: Li Haijie was normal during the Nanjing University, and did not affect learning due to physical reasons.

Professor Fu Xinyi was impressed by the student's hard work: he spent almost all time reading and learning.

Li Haijie also bought a book for her mother, helped her download English materials, and encouraged her to learn computers and art. Yao Lixiang learned for a while, and he was not conscious, and it was difficult to persist. Li Haijie told her that he lived to be old and learned. The old man seventy -eighty years old was studying. You are only in his fifties. Why not work hard?

At the end of June 2021, Li Haijie received a notice of admission to Dr. Peking University, which was where he dreamed of. Li Haijie was very excited. In mid -July, he returned to Baoying County, Yangzhou City, Yangzhou, Yangzhou. But unexpectedly, a few days after returning home, he had gastroenteritis, and his condition developed again.

"Curse"

In April 1994, Li Haijie was born in Shanghai.

At that time, Yao Lixiang and her husband operated a tailor shop in Shanghai and could make two or three thousand yuan a month.

In the early years, the family lived flat and beautiful. Until Li Haijie was 4 years old, he had a high fever and had five stitches in the hospital without fever.

Yao Lixiang couldn't remember how his son later burned back. He only remembered that the moment he was diagnosed with blood friendly disease, he was like a thunderbolt. Soon, the couple returned to their hometown with their son.

Over the years, this hereditary blood disease, like a curse, shrouded Yao Lixiang's family: Yao Lixiang's uncle, a patient with hemophilia, fell from the bed in the age of forty, causing acute bleeding to die; Mother is a carrier of hemophilia pathogenic genes; Yao Lixiang has four brothers and sisters, and her brother Yao Minzhi is a patient with hemophilia.

Depending on the deficiency of different coagulation factors, hemophilia is divided into three types of A, B, and C. Among them, type A patients with hemophilia accounted for the majority, and male patients are mainly male patients. Patients with hemophilia have a tendency to bleed after mild trauma for life, and "spontaneous" bleeding can occur without obvious trauma patients.

"Joint, muscles, subcutaneous tissue ... It is prone to bleeding in places with blood vessels in the body, and you can't see the wound." Said Yao Minzhi, who was also a patient with hemophilia.

He recalled that when the nephew Li Haijie was active when he was a child, he often bouncing and around the big tree. The young son does not know the sorrow, does not know the disease, and cannot exercise vigorously. Only his mother Yao Lixiang followed him, chasing Mo Mo, but the child ran faster.

After the third grade of elementary school, Li Haijie had joint bleeding, swelling, and painful symptoms. It was sent to the hospital for treatment, mainly because the transmission factors were controlled to control bleeding.

When he first returned to his hometown, the couple opened a tailor shop. Later, Li Haijie often went to the hospital with illness. They couldn't open normally and had to turn off the tailor shop. Her husband Li Shurong went to a clothing factory to fight, and then went to work through a local disabled federation. Yao Lixiang mainly takes care of his son.

A little savings of the early years of launch were quickly used. Yao Lixiang said that since his son is eight or nine years old, he has borrowed money at home, often borrowed and repaid, and borrowed it again.

When Li Haijie was in the fourth grade, he was knocked down by a car on the way to school, and the driver ran away. Yao Lixiang said that they were very lacking money at the time and applied Li Haijie at home. Soon, Li Haijie's bleeding and inflammation were repeatedly bleeding and swollen like two dumplings.

The couple borrowed money and took their son to seek medical treatment. Because of the poor coagulation function, the surgical risk of hemophilia patients was high, and many hospitals could not do it.

"If you don't perform surgery, the congested and swollen feet will be necrotic." Yao Lixiang recalled that some doctors suggested that she had amputated surgery for her child. She was unwilling and took her son to Shanghai.

At the end of January, sitting in the emergency room of the three hospitals in Shanghai, Yao Lixiang recalled the scene of more than ten years ago: "At that time, it was also a surgery here to keep Hai Jie's legs." At that time, they were waiting in Shanghai in Shanghai. For more than three months, in order to save expenses, her husband Li Shurong also worked for a month outside.

Although she kept her legs, Li Haijie couldn't walk since then, and could only take a wheelchair.

Yao Lixiang guessed that his son must be sad at that time, although he said nothing. In her impression, her son rarely cried. When the pain was unbearable, she just pulled her hair hard.

After returning from the hospital, for a long time, Li Haijie was in a low mood. At that time, the head teacher brought the whole class to visit him. Yao Lixiang remembers that they wrote a lot of comfort and encouragement on their son's book, and this book is still preserved at home.

In the fall of that year, Li Haijie finally returned to the school. At the beginning of the school, Yao Lixiang rented a room near the school, and she became a mother -in -law.

Mother and child

Because of the three differences and five leave, Li Haijie began to study at a very young age. If he didn't understand, he asked his classmates, teachers, and even nurses.

Yao Lixiang asked his son to take the exam, even if he took a few days in a semester. Sometimes, Li Haijie's hand was swollen and could not hold the pen. He could only write with his thumb with his thumbs; once, Li Haijie's sciatica was neuralgia and could not sit on the school. Yao Lixiang feels that only by taking the exam can he understand his learning effect.

In the sixth grade, Li Haijie was hospitalized and missed the graduation exam. Yao Lixiang went to the Yangtze High School teacher and asked him to try a semester and couldn't keep up again. In the end, the school agreed to let Li Haijie enter junior high school.

He still often takes leave to the hospital, sometimes a few days, weeks, or even a few months. When the weather is too cold, or when it is too hot, Li Haijie is easy to be uncomfortable. Later, the school arranged a room for him to rest when he was unwell.

After graduating from junior high school, Li Haijie was admitted to the best high school in the county. The school not only arranged a dormitory for them, but also arranged for Yao Lixiang on the school.

Yao Lixiang said that in order to take care of Li Haijie, the school arranged their classrooms on the first floor. High school academic pressure is even greater. Li Haijie often gets up at five in the morning and goes to bed at 11 or two in the evening. Sometimes, he was tired of reading, so he pierced his hand with a pencil. Yao Lixiang saw that there were a lot of little red dots on the back of the son's hand and asked him in surprise. Li Haijie hid his hand and said, nothing, just pierced with a pencil.

Yao Lixiang felt that her son was like her -although she did not graduate in junior high school, she had to do everything. In the past, the customer felt very good to help people make clothes, and she was still dissatisfied. Moreover, many people have helped them along the way.

From junior high school to high school, Li Haijie's grades are among the best in the grade. He has been rated as the "Civilization Young Man" in Baoying County and the "self -strong model" in Yangzhou.

After Li Haijie's hematopoorsis, Yao Jian had persuaded his sister and brother -in -law to regenerate a child. Yao Lixiang did not agree with her husband. In late March, Yao Lixiang recalled that if they regenerated a child at that time, they would inevitably ignore Li Haijie.

For a long time, she has always been guilty to her son. She always felt that she had taken care of him in the past, so that he had suffered so much.

She remembers so far that in the winter, Li Haijie was at home and accidentally fell to the ground and could not move. When she entered the door, Li Haijie, who was paralyzed on the ground, said, "Mom, don't be angry, I fell."

In Yao Lixiang's memory, Li Haijie has never complained.

During the senior class, Li Haijie wanted to choose the Department of Store and study biological science in the future. However, Yao Lixiang considers his son's physical condition. He suggested that he choose a literary department and find a cultural job after graduation. At first, Li Haijie resolutely disagreed. Later, Yao Lixiang found the teacher and finally persuaded him to choose the liberal arts.

Before the college entrance examination, Li Haijie passed the autonomous enrollment written test of Tsinghua University. In those days, the weather was hot, and Li Haijie stayed in the air -conditioned room for a while, suddenly a cold and fever, bleeding and bleeding on his right arm, bleeding and pain. Yao Lixiang remembers that on the first day of the college entrance examination, the son was in poor condition, and the swollen right hand could not hold the pen to write.

After the college entrance examination, Li Haijie thought about re -reading, considering the difficulty of his parents, and gave up again. He comforted his mother and said, who can guarantee that I will be able to take the test next year?

In the end, he did not reach the admission score line of Tsinghua University, and was admitted to the Department of Philosophy of Nanjing University with a score of 377.

In May 2021, Li Haijie took a group photo with his parents at Nanjing University.

"The meaning of your own meaning"

For a long time, the family did not understand where Li Haijie's interest in philosophy came from. On one occasion, Xiaoyi Yao Minzhi asked him why he chose philosophy and what exactly did philosophy learn?

Li Haijie told him that scientifically promoting the advancement of technology, philosophy studies, studying society, and promoting the development of society.

Yao Minzhi still doesn't understand, but he believes that the nephew is, as long as he says, he can definitely do it. "His prizes and certificates in his family have half a person in the pile."

Because of the patients with patients, Li Haijie has a good relationship with Xiaoyu. The two often chat together and play chess together. Most of them are Li Haijie.

"Generally, patients with hemother like him may think that my body is already like this, why do I have to learn so hard?" Yao Minzhi felt that his nephew had pursuing and his heart was strong.

In fact, Li Haijie was also confused and trapped in life, but he never told his family.

In the spring of 2018, Li Haijie wrote in an article: Because of my personal growth experience, I had a long time to have some so -called very big problems, such as the meaning of life, the ultimate death of death. Philosophy to my original motivation.

In the article entitled "Create your own meaning world", he wrote that in a sense, everyone did not live in the so -called real world, but lived in the meaning of everyone's own meaning.

The old master Xinyi can feel the kind of forgetfulness he immersed in the "meaning world". He recalled that whenever Li Haijie discussed academic problems with him, he had light in his eyes. Philosophy made him forget the disease and confused the future, although it could not solve any realistic problems.

"Last words"

On October 8, 2021, Li Haijie was admitted to a three hospital in Beijing

The doctor told Yao Lixiang that Li Haijie had a serious condition and needed fake tumor resection surgery, at least 3 million yuan. But before coming to Beijing, the couple only borrowed a total of more than 100,000 yuan.

On the third day of the hospitalization, Li Haijie's abscess skin was urged on the back. The doctor said that if he did not perform surgery, his life had only a few months left. Yao Lixiang was unwilling to wait for his son to die, but he was helpless.

At the end of November 2021, the couple took Li Haijie back to their hometown hospital.

Just when they were unable to do the cost of the operation, on December 15, 2021, Li Shurong had a car accident. He was knocked down by a truck and died of ineffective rescue. When Yao Lixiang heard the news, her husband had gone and did not see the last side.

Yao Lixiang said that after the incident of her husband, the local disabled federation quickly arrived at the hospital to help handle various affairs. But the pillar of the family fell down, what should I do in the future?

That afternoon, Tan Jingyang saw the information of Li Haijie in the group of classmates, saying that his father had an accident. Tan Jingyang remembers that Li Haijie was a bit incoherent, and he had never been so panic.

Tan Jingyang asked the information to ask, until the early morning of the next day, Li Haijie replied: Dad is gone, and my mother collapses. I must be strong and hold it. Yao Lixiang remembers that after she returned to the ward, Li Haijie wiped her tears and said, "Dad is gone, you still have me."

Later, the accident of the traffic police brigade of the Public Security Bureau of Baoying County was determined that the owner of the truck was fully responsible for the traffic accident and Li Shurong had no responsibility.

Immediately afterwards, the media reported Li Haijie's story and helped him initiate fundraising online. "In less than a week, she raised nearly 2 million yuan." Yao Lixiang said that she was grateful to the society, the media, and the teachers, classmates, friends ...

Yao Jian said that in fact, Li Haijie has always been reluctant to bother others, let alone report his story by the media. In his opinion, this is the dignity of the nephew to guard. But this time they are really "going".

His father's unexpected death had a great blow to Li Haijie, and his condition deteriorated again. At that time, a drainage tube was inserted on his waist and could not lie flat.

The local hospital reminded him to transfer to the large hospital as soon as possible. After raising the money, Yao Lixiang immediately contacted the hospital in Shanghai.

One night before departure, Li Haijie explained a lot of things to Xiaoyi Yao Minzhi: the books saved during college, how to deal with the unused computers, must give it to those in need ... Mom has a bad temper. One level, please take care of them.

Yao Minzhi said with a sour nose and said to the nephew: When the disease was cured, you came back and told them.

Future

When Li Haijie's surgery ended and woke up from the coma, he remembered the death of his death-

At that time, when he went to the hospital, his father always ran before and after; when he was in a bad mood, his father had always comforted comfort; every time he went home, his father always made a large table of dishes; now there is no ...

Yao Lixiang said that, compared to her strict, her husband loved his son more, and he never said a word.

Li Haijie and his father, the two took a group photo under the blooming tree.

After her husband died, Yao Lixiang couldn't sleep well every night. He often fell asleep at one o'clock in the morning and woke up at two o'clock; fell asleep at three o'clock and woke up again at four o'clock. But she did not show these in front of her son, because she often burst into tears when she raised her husband.

After the epidemic, Yao Lixiang went to the hospital to visit his son, and felt that he was better. On August 6, she told reporters that Li Haijie had already completed the discharge procedures. The mother and son rented nearby and waited for the body to regulate, so she went to Peking University to report. But the start time is approaching. The doctoral admission has been delayed for a year. Yao Lixiang is a little dazed. This is also Li Haijie's most worrying now.

According to the "2020 incidence of hemophilia, the number of illness, the treatment of the treatment, and the scale of the scale of the hemophilia" of the incidence of hemophilia in China ", according to the speculation of the incidence, there are 140,000 patients with blood friendly diseases in China.

Once the hemophilia is diagnosed, it is necessary to supplement the coagulation factors for life to control bleeding and treat complications or surgery in time.

In 2017, hemophilia treatment was included in the national medical insurance. In 2018, the five departments jointly announced the "First Batch of Rare Diseases", and hemophilia was also among them.

Yao Lixiang remembered that in that year, Li Haijie began to prevent sexual treatment, but because of economic constraints, the treatment dose was significantly reduced compared to the standard dose.

In 2017, Alex Dussert, patients with severe hemophilia, won the bicycle Terrier Championship, which also made hemophilia patients see hope.

In fact, before last summer, Li Haijie did rehabilitation training. At that time, he could turn a crutch and embark on a long way. Yao Lixiang thoughtlessly thought, as long as he insisted on standard prevention treatment, he might "be like a normal person."

In April 2021, Li Haijie practiced on a crutch at Nanjing University.

(In the text, Yao Minzhi and Yao Jian are a pseudonym, Zhao Zhiyuan also helps this article)

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