10-year-old Lele (pseudonym) licked a bite of the cake and was satisfied. This is the first time he has eaten a cake in 3 years.
More than two months ago, Lele had just undergone a kidney transplant. After having a healthy kidney, this young boy who had been suffering from uremia for three years was finally able to get rid of the many painful problems brought by the disease and return to normal growth.
Lele is lucky. His situation made his 13-year-old sister Jiajia (pseudonym) both happy and disappointed. Because, she, who was also diagnosed with uremia, had to continue to wait for the appropriate kidney source.
In the kidney transplant ward of the First Affiliated Hospital of Zhejiang University School of Medicine, it is not uncommon for young patients like Lele and Jiajia: at a young age, they are anxiously waiting for a hope with a heavy weight that is not consistent with their age.
"Because the early symptoms of kidney disease are not obvious, many children have already progressed to uremia when they discover the disease. Although life can be maintained through dialysis treatment, compared with adults, the biggest difference between pediatric uremia patients is that if transplant surgery is not performed in time, the growth and development of young patients will be greatly affected." Wu Jianyong, executive deputy director of the Kidney Disease Center of Zhejiang University First Hospital, said, "From this perspective, children's kidney transplant is more meaningful than adult kidney transplant."
Wu Jianyong and the young patients with kidney transplantation were in the ward
in the ward
my younger brother couldn't help crying
"I don't want this catheter!"
112 cm tall, a bit solid. When a reporter from Qianbao met Lele in the kidney transplant ward of Zhejiang University First Hospital, he thought he was at most 6 years old.
"Three years ago, after discovering this disease, his height did not change again." Lele's mother Fang Li (pseudonym) said softly.
Lele was found to be abnormal in 2019. One day, he suddenly had fever and asthma. At first, he thought it was a cold, but his condition was getting worse and worse, and he felt like his trachea was blocked. Later, he went to the city hospital and found out that he had kidney failure.
Fang Li and her husband came to work from Anhui to Wenzhou. They never expected that their lively young son would get seriously ill. "He has always been shorter than his peers and has not been to the hospital very much." The rapid progress of the disease has brought consecutive impacts to the family. Due to dizziness, convulsions and urgent breathing, Lele was admitted to the intensive care unit twice, and renal failure quickly progressed to uremia.
At the end of 2020, Lele's creatinine rose to more than 500 (the normal creatinine value of children is between 20μmol/L -50μmol/L). At the suggestion of the doctor, he began peritoneal dialysis (hereinafter referred to as peritoneal permeation): a catheter is inserted into the abdomen, and the peritoneal permeation fluid is injected into the abdominal cavity through the catheter, 900 ml each time, and 4 to 5 times a day.
When the abdomen is penetrated, it will cause pain and bloating. Lele often can't help crying and screaming for not wanting this catheter.
"But he still protects the catheter with his hands while shouting. He actually cherishes this catheter very much. Sometimes I bathe him, and when I accidentally touch him, he will blame me." Speaking of his son's small movements, Fang Li couldn't stop crying. After
started dialysis, Lele took a break from school. "He didn't play with the children after he got sick. He was inferior and said that he was different from others." Fang Li said that Lele knew what his illness meant, but never said it. The only time, after the follow-up visit, he asked his mother how she was. Fang Li comforted him: The doctor said he was much better.
Lele replied with a smile, "Don't lie to me, okay, I understand everything." Fang Li always remembered the smile of her son.
My sister quietly drew
before and after getting sick, and after she had an upper abdominal distension, Lele's condition gradually stabilized, but the bad luck of this family followed one after another.
The second daughter Jia Jia suddenly felt dizzy. The examination results showed that she had the same disease as her younger brother: kidney failure.
Fang Li feels that the sky is falling. I don't remember how many nights she secretly got up to wipe her tears while the children fell asleep. During that period, letting the two poor children who suffered recover as soon as possible was the whole courage and belief to support Fang Li to survive.
After Jiajia was diagnosed, the relationship between the two children became closer. They are siblings and patients who share hardships. Fang Li often saw the two of them gathered together to discuss quietly.
"I heard my sister ask my brother what will happen at what step the disease will be. My brother explained in detail how the abdominal ventricular catheter is installed and what it feels in the belly..."
patients with uremia have strict dietary restrictions: low sodium, low potassium, low fat, and low scales. A bunch of foods that cannot be eaten: nuts, cakes, drinks...
Although they are greedy, the two children are very restrained. After they get sick, they never ate these things again, and there is no cake on their birthday.
Similarly, Fang Li and her husband never eat these things, "You can't make them jealous."
Once, Lele couldn't help but say to her mother: Let me take a look at the cake, I'll take a look.
Jiajia once painted two paintings, and Fang Li accidentally saw: a picture of "I" before getting sick, healthy and cheerful; a picture of "I" after being haggard and depressed.
Fang Li can only cry.
The younger brother successfully changed his kidney
The sister is still waiting and looking forward to
"I don't want my daughter to have a ventral abdomen, it's so painful." Thinking of Lele's experience in the past few years, Fang Li was unwilling to let her daughter go on the same path anyway. "I heard that the kidney transplant surgery at the First Hospital of Zhejiang University was very good. Many children got rid of abdominal and hemodialysis after successful transplantation here, so we hurriedly brought our two children to queue up. "
For this ordinary family, the treatment fee for the two children is huge. The couple took out all their savings, transferred them, raised funds... and tried every means.
In February this year, Fang Li and his wife took their two children to Zhejiang University First Hospital to queue up for a kidney transplant.
While waiting for the time to match the kidney transplant, Lele and Jia Jia were more anxious than Fang Li. The two of them ask their mother almost every day: Have you received the call? And constantly urged her to ask again.
In May this year, after waiting for more than two months, Fang Li received a call from Zhejiang University First Hospital as she wished - Lele matched the appropriate kidney source.
"I'm so happy and sad. What's happy is that my son matches it; what's sad is that my daughter doesn't match it." Jiajia's creatinine value continues to rise, and it has reached nearly 1,000μmol/L. Fang Li feels that she is more urgent.
Fang Li also felt Jiajia's loss, "But she just asked: Can't I wait?"
A child of this age can already hide his emotions. Compared with Lele's Dunshi, Jia Jia looks slim. She is 155 cm tall and her growth and development are not so obvious. She and her younger brother chatted and laughed quietly, as if there were endless secrets. When she heard her mother telling her condition, she seemed calm and alienated.
Lele's surgery went smoothly. After the transplant, he no longer had to have a abdominal dissection every day. He did not have that catheter on his body. His naughty and clever nature returned to this little boy.
Mom still firmly believes that Jiajia will wait for this day.
After the operation, Lele did not have that catheter on her body, and she was much more free and cheerful as if she was breaking free from the constraints.
Such changes are the ones that Wu Jianyong, executive deputy director of the Kidney Disease Center of Zhejiang University First Hospital, and chief physician Wu Jianyong, most willing and most often see when reexamination for children with kidney transplants - the child has grown taller and fatter again; he loves to laugh more and becomes more lively.
"Children's uremia is mostly related to genetic mutations. Unlike adult patients, if transplant surgery is not performed in time, the physiological and psychological development of young patients will be restricted, which will lead to delayed education and difficulty in integrating into society."
Wu Jianyong also observed that almost every child who successfully undergoes kidney transplantation can return to normal within a certain period of time. Many times, they may even forget how they are different from their peers.
The 6-year-old girl who was tortured by the pain
has her own understanding of death
Children who have successfully had kidney transplants will all be like Lele, with many minor changes. For example, 6-year-old Tiantian (pseudonym): she loves to laugh and talks too much.
Tiantian after the operation is more heart-warming than her heart
Tiantian has long slightly curly hair, and a few strands of hair on her head are delicately braided into braids. She is so white that she smiles like a doll. Just looking closely, she was thin and almost all of her bones, 105 cm tall and weighed only 34 kilograms. This little girl has just had a transplant surgery for more than two weeks.
Tiantian fell ill last year.At that time, she went to the local hospital for treatment due to dyspnea and asthma, and was diagnosed with acute laryngitis and colds.
"Her illness develops very quickly, with weak legs, unable to walk, vomiting, coma, and he also entered the ICU." When he received the diagnosis of renal failure of his daughter, his mother Li Na (pseudonym) felt dizzy, "I am staying outside the rescue room, and every second is suffering."
In Li Na's perception, renal failure is equivalent to an incurable disease.
The creatinine value of sweetened html continues to rise, and at its highest level is close to 2000μmol/L, and has developed into uremia. She started a two-month ventricular diarrhea: because the toxins in the body are very high, at most, 10 times a day, each time for 2 hours.
"She is too young, and she can only have 600 ml of abdominal dissection at a time." Li Na said that in this process, her daughter was extraordinary and sensible. Although it hurts, she never cried. "Many times, it is me crying."
Once, Li Na stretched out her arm to her daughter: If you hurt too much, just bite your mother.
"She said, I don't bite my mother, otherwise my mother will hurt and I will cry." Speaking of her daughter's answer again, Li Na's eyes turned red.
Because of treatment, Tiantian needs to take a lot of medicine every day, and at most, she has to take seventeen or eighteen pills a day. She was very resistant at first, and there was such a conversation between mother and daughter -
"If you don't take medicine, your illness will not be cured."
"What is it that it cannot be cured?"
"It's just that it will be gone."
"Is it like grandpa?"
sweet grandfather passed away when she was very young, which was her vague perception of death. Since then, Tiantian has been very proactive every time she takes medicine. She said to her mother: I don’t want to be like grandpa.
After a painful abdomen, she said happily: Mom, look, I am not dead!
Types After entering the new kidney beans
She became lively and active
In April this year, after inquiring from multiple sources, Li Na took her daughter to Zhejiang University First Hospital, hoping that her daughter would have a chance to regain her life.
"I thought I had to wait for a year, but I didn't expect to receive a notice in less than two months." Li Na kept saying that she and her daughter were particularly lucky: from discovery to diagnosis to transplant surgery, there was almost no wasted time.
Li Na explained to Tiantian this way to kidney transplant: Your kidney beans are broken, and you need to plant a new "beans". The mother and daughter are waiting for the process of kidney source and are entangled.
Tiantian once asked her: Mom, where did the new "Doudou" come from? Li Na said that it belongs to another child.
Tiantian is curious: Other children gave me Doudou, what should he do?
After hearing my mother's explanation, Tiantian cried: I don't want Doudou anymore, I don't want other children to be away...
At the end of June, Tiantian completed the transplant operation at the Kidney Disease Center of Zhejiang University First Hospital. The operation started at 6 pm, and it was almost early morning when Tiantian was pushed out. Tiantian, who was a little confused, heard her mother's screams, opened her eyes and looked at it, and fell asleep again.
For the first time in more than a year, Li Na has experienced the feeling of peace of mind.
Tiantian after the operation no longer needs to be penetrated every day, and the little girl becomes lively. When Li Na talks, she crawls around her mother, interrupts and asks questions from time to time. If it weren't for her too slender limbs, it would be difficult to tell that she is a young patient who has just recovered from a serious illness.
"The medical staff here are very nice to us, buy us breakfast every day, and are very patient with the children." Li Na said.
She was standing beside the hospital bed, her eyes were sunken and swollen, and she looked tired. After Tiantian got sick, she didn't sleep well. "As long as it is sweet and peaceful, I won't ask for anything else."
The twin sister is one head shorter than her sister
It has grown faster than 20 cm a year after the operation
Since the Zhejiang Province launched organ donation in 2012, Zhejiang University First Hospital has performed 115 children's kidney transplants, of which 22 were younger than 10 years old, and the youngest was only 4 years old. Judging from clinical cases, 90% of small patients will be suppressed during the illness.
"If a child uremia patient can complete a kidney transplant as soon as possible, his growth and development will catch up with his peers later, which is medically called catching-up growth.It is precisely for this reason that our country's organ distribution system has policy preferences for children with uremia under the age of 18. As long as the match can be smooth, children may give priority to kidney transplant surgery within several months. "Wu Jianyong said.
13-year-old Mengmeng (pseudonym) was diagnosed with uremia in 2015. Her height was frozen at 112 cm for several years.
"At that time, she weighed only more than 40 kilograms, and she was dark and thin. "Meng Meng's mother said.
In 2017, they went to Zhejiang University First Hospital for medical treatment, and after waiting for more than two months, they underwent a kidney transplant.
Meng Meng was sick, and her sister accompanied her
"Meng Meng and her sister are twins. Before the operation, she was one head shorter than her sister. The second year after the operation, her height caught up with her sister, and she grew by almost 20 cm at once. "
Mengmeng (right) just finished the operation, she was much shorter than her sister.
These were unexpected to Mengmeng's mother. "At the beginning, I thought this disease could not be cured. I never expected that after timely treatment, it would not only save my life, but also catch up with all aspects of development. "
Now, 5 years of surgery have passed, Mengmeng's growth and development are almost in line with her sister. She has become whiter and fatter. The two sisters can grow up beautifully again. In the eyes of her mother, this is the most beautiful thing in the world.
Qianjiang Evening News·Hour News Reporter Wu Chaoxiang Correspondent Wang Rui Wei Chunchun
