36-year-old in ICU
One foot stepped into the gate of hell
Just as he was forced to straddle the other foot
Hematology specialist of the First Affiliated Hospital of Zhejiang University School of Medicine
Found a “trailer”
Hold him firmly in time
“This disease is neither terminal nor intractable
There is a cure, don’t give up! ”
“No money, let’s figure it out!”
So, he survived
April 17
World Hemophilia Day
hemophilia
If you know it, it’s a tameable “little sheep”
If you don’t know it, it’s a monster
Can be disabling, deadly
Today
Let’s learn more
How fragile is the world of “Glass Man”
Sudden massive hemorrhagic shock
The family is ready
Brother Chen (pseudonym) is 36 years old, a native of Sichuan, working in a garment factory in Tongxiang. A month ago, he found there was a lump on the left waist and there was a little pain, but Brother Chen is used to these symptoms. “He often hurts either here or there.” Brother Chen’s lover teased that he was the sweetest in the family, working part-time for at least one week off.
“Wife, I have no appetite.” Brother Chen, who can usually eat a large bowl of rice, not only lost his appetite for half a month, but also developed nausea and vomiting, and he couldn’t stand up straight. Still dizzy and confused, “Bang Dang”, Brother Chen fainted at home, but fortunately his lover was by his side, so the ambulance was sent to the local hospital in Tongxiang.
“Hemorrhagic shock.” Tongxiang local hospital diagnosed hemorrhagic shock. Brother Chen’s protruding lower abdomen was full of blood, and the lump in his waist was actually also A blood clot, he was in shock due to excessive blood loss. “Hurry up and take it to Hangzhou University Hospital, we can’t handle it, but you have to be prepared for the loss of people on the way.”
So, Brother Chen was taken to the Emergency Department of the First Hospital of Zhejiang University by ambulance.
The abdominal cavity was full of blood, and it continued to increase. The condition was very dangerous. Brother Chen was urgently sent to the ICU.
As for why the bleeding occurs? When the doctor asked about the medical history, Brother Chen’s lover was stunned. Facing the sudden situation, she had tears in the corners of her eyes, and repeatedly emphasized on her mouth, “A good person suddenly rests at home because of low back pain and leg pain. How can this happen?”
In the ICU, Brother Chen’s blood was like a dam bursting, which could not be blocked by any means. Because the abdominal cavity is full of blood, it is difficult to carry out various examinations. Taking blood from the abdomen is an invasive treatment. If the bleeding cannot be stopped halfway, wouldn’t it be more troublesome? So is minimally invasive blood sampling feasible? However, minimally invasive needs to be carried out with the assistance of fine exploration, because the abdominal cavity cannot be done with blood exploration.
“Call Professor Jin Jie of the Department of Hematology for a consultation.” While organizing the consultation, the ICU informed the family members that their condition was serious and that they should be mentally prepared.
Brother Chen’s lover has to face high medical expenses in the ICU in addition to all kinds of critical illness notices in the ICU every day. “Sister, I have no choice but to borrow some money from you in the ICU.” Brother Chen’s parents divorced when he was three or four years old. His sister was in Yunnan with his father, and his mother took him to Sichuan. , the sister who had only met once after the separation heard that her brother was critically ill, and transferred 20,000 yuan without hesitation, “If you really can’t save him, take him back to his hometown in Sichuan. Both children are in their hometown, and they always have to see their father. The last.”
“Well, relatives in his hometown have prepared his funeral, and relatives will take him back to his hometown in a van.” Although Brother Chen’s lover expressed her heart There is a lot, but he doesn’t want to accept his fate and wants to borrow more money, even if he saves him one more day. “We met and fell in love more than ten years ago, and my family advised me to take another look at it and find a stronger body.” Brother Chen’s lover said tearfully, “Although he is delicate, it hurts to do some work, but he He’s so good to me, and for that, I’ll marry him and follow him for the rest of my life.”
A careless remark from a family member
This expert’s verdict: Saved
“We don’t have any genetic diseases in our family. Speaking of what’s wrong with the family, I heard my husband say that he had a cousin who died of pain in his feet when he was very young
/strong>.” Professor Jin Jie, honorary director of the Department of Hematology, immediately became vigilant when he heard the words of Brother Chen’s family, “Apart from my cousin, are there any other relatives in a similar situation?”
“Yes! He has a cousin who has disabled legs, his calf is as thin as my arm, and a cousin who is lame.” Professor Jin Jie heard Here, I already have the answer in my heart – hemophilia.
“Does your spouse usually bleed or bleed uncontrollably?” “Yes! He’s been bleeding from his teeth lately, and a first-rate nosebleed can’t stop. “Brother Chen’s lover said that the worst time for Brother Chen was 18 years ago when he had an operation at the local hospital in his hometown in Sichuan because of stomach pain. The bleeding couldn’t stop on the operating table, and he almost died.
“This patient’s inexplicable hemorrhage cannot be stopped, and there is a high probability of hemophilia.” Professor Jin Jie suggested that if hemophilia is diagnosed after relevant examinations, immediate use of relevant drugs can improve He suffered massive intra-abdominal bleeding and did not require surgery for the time being.
After relevant tests, Brother Chen was diagnosed with hemophilia A. This is a bleeding disorder with hereditary coagulation dysfunction. The biggest feature of this disease is the lack of eight factors, which leads to prolonged coagulation time. Lifelong has a tendency to bleeding after minor trauma. Severe patients can also occur “spontaneous” without obvious trauma. Sexual” bleeding.
Why did Professor Jin Jie judge that Brother Chen was suffering from hemophilia based on the fact that his cousins had leg pains and leg disabilities described by family members? This is the hateful part of hemophilia – heredity. The hemophilia A suffered by Brother Chen is a recessive inheritance of the X sex chromosome. This type of hemophilia is also the most common clinically. type. Brother Chen, as a male, his sex chromosome is XY, he got a Y chromosome from his father, then his disease-causing X chromosome comes from his mother, so his mother must be a carrier of the disease-causing gene, and his cousins’ The X chromosomes came from Brother Chen’s aunts, who were born to the same father as Brother Chen’s mother. Their disease-causing X chromosomes all came from Brother Chen’s hemophilic grandfather, so they must also be carriers. “The genetic characteristics of this type are carried by females, onset in males, and rare in females.”
“Is it recommended to check whether your children have hemophilia?” Since the disease is hereditary, Professor Jin Jie said, The best treatment for hemophilia is prevention. , once the disease has been diagnosed since childhood, regular transfusion of coagulation factors can be done. However, due to the hidden symptoms of the disease and little awareness of it by the common people, many patients with hemophilia cannot receive effective preventive treatment. Swelling and limited movement. Once the movement is severely restricted, it can lead to muscle disuse atrophy, resulting in flexion contracture deformity, and even joint disability in severe cases. In severe cases, blood loss can even be fatal.
“No money! Let’s figure it out”
Life is most important
The lover wandering at the gate of hell is saved, and Brother Chen’s lover is starting to worry about the cost. “That’s how people are. When the two problems of human life and money are put in front of you, you will feel that money is nothing. Even if I go to beg for food, I will try my best to keep him. But when there is only a problem of money left, it is very difficult. It’s real.” Brother Chen’s lover was afraid that people would be saved, but the money couldn’t be collected by all means. “That feeling of powerlessness is very hopeless.”
“Let’s find a way, it’s important to save lives!” Since Brother Chen did not pay medical insurance, he had to pay for the coagulation factors that he needed to save his life. Professor Jin Jie saw This simple and difficult family really wanted to help. She heard from the nurse that they had already raised money online. She rarely posted on the Moments, and she specially forwarded the call for loving donations. Overnight, Brother Chen’s online fundraising increased by three Thousands. The Party branch of the Hematology Department also organized donations for Brother Chen’s family.
“Can you help us to donate 1.8 factor to a patient in need?” Professor Jin Jie called at least two medical units he had cooperated with to ask for love and welfare, so the eight factor of hundreds of thousands Drugs are coming.
The eight factors were infused into Brother Chen’s body, his bleeding stopped and the accumulation of blood in the abdominal cavity was continuously absorbed and reduced. He was transferred from the ICU to the general ward of the Department of Hematology and saw that He was haggard a lot of his lover and his eyes were red.
“I was very scared lying inside. I was very afraid that I would never see you or my son and daughter.” Brother Chen admitted that he thought he was “finished” this time.
“Your cousin and the others have prepared a shroud for you, you don’t need it anymore!” Brother Chen’s lover also admitted that relatives in his hometown in Sichuan have prepared his funeral for him. “I will continue to serve you in the future, and you will continue to be a charming man.” Brother Chen’s lover held Brother Chen’s hand and smiled.
They are called “glass men”
Currently incurable
We mentioned earlier that hemophilia is a disease in which the lack of blood clotting factors leads to abnormal blood clotting function. It is hereditary and currently incurable.
“They are as fragile as the ‘glass men’, and a small bump may lead to continuous bleeding.” Although there is no cure, Professor Jin Jie would like to emphasize again that hemophilia patients can be prevented by preventing Sex therapy can have the same quality of life as a normal person, provided that it is diagnosed in time, preventive treatment, avoiding bleeding in life, and choosing appropriate exercise.
According to online data, there are about 100,000 hemophilia patients in China, but only about 30,000 registered cases are currently registered. “This type of blood disease is not as well known as leukemia.” Professor Jin Jie said that due to the diverse symptoms of hemophilia, many patients with hemophilia suffer long-term pain and eventually disability due to lack of regular treatment. But in fact, the initial screening of hemophilia is also very simple and can be carried out in many primary medical institutions, but many patients and even doctors do not realize that this is the main reason why the disease is easily missed.
Experts remind: When abnormal bleeding occurs, you can go to a regular hospital to draw blood for routine blood tests, coagulation function, coagulation factor activity, etc.. Now, early screening for hemophilia has been advanced to pregnancy. If there is a family history of hemophilia, pregnant women can perform amniocentesis for genetic screening during pregnancy, so as to conduct prenatal diagnosis and pregnancy counseling on whether the fetus has the disease.
We hope that on World Hemophilia Day, more people will know about these diseases, so that people with hemophilia can be properly diagnosed and treated, and prevent disability and death.
This article is original by the First Academy of Zhejiang University