For as long as he can remember, Peng Keyi's body has always been "accompanied" by pain, but at first, he didn't know the source of the pain, which was quietly bleeding from inside his body.
"Later, although he was diagnosed with hemophilia, the treatment also took many detours. Before the age of 15, Peng Keyi could only endure the pain soberly. After more than ten years of repeated bleeding, his joints have been deformed, not only can his two arms not be straightened, but hemophilia arthritis has made his ankles swollen as big as steamed buns.
It was only in 2008 that Peng Keyi learned that only by continuously injecting clotting factors into his body could he strive to "get close to the life of a healthy person". And now, there are still many "glass people" who may be experiencing the frustration and pain of his past.
Because I have been drenched in the rain, I also want to hold umbrellas for more people. In 2020, Peng Keyi officially registered and established Jinan Hemophilia Home, weaving a mutual aid network of mutual comfort and support, hoping that more patients and families can face this rare disease and live a normal life as soon as possible.
April 17 is "World Hemophilia Day", on this special day, Qilu Evening News reporters approached the hemophilia community and told about the ups and downs of their struggle against bleeding.
The joints were swollen like balloons, and I couldn't sleep all night in pain
Ever since Peng Keyi could remember, he knew that he was different from other children.
"At that time, in kindergarten, other children could run and jump freely, but once or twice a week, I would have unexplained swelling and bleeding in my joints, and I would be in pain and couldn't sleep all night. When the joints are swollen, they are like balloons full of air, and even if they are tired enough to fall asleep, Peng Keyi still moans in pain in his sleep.
And all this pain stems from Peng Keyi's severe hemophilia type A patient.
As a rare and recessive inherited disease, hemophilia is divided into type A and type B.
Persistent bleeding causes swelling and pain in the joints
The detection of disease is early and early. In 1993, Peng Keyi was born in a rural family in Zhangqiu, Jinan, Shandong. One day when he was more than a year old, Peng Keyi had been crying in pain, and his parents found that he had a large swollen and hard bruise on his buttocks, so they quickly took him to the hospital for examination.
"The most common manifestation of hemophilia is bleeding that is difficult to stop, including post-traumatic bleeding and spontaneous bleeding (bleeding that occurs spontaneously without any trauma). Fang Yunhai, deputy director of the Shandong Provincial Hemophilia Diagnosis and Treatment Center, said that bleeding occurs less before children start crawling and walking. As people get older and more active, bleeding becomes more common.
"Bleeding can cause painful swelling of muscles and joints, as well as limited limb movement. Professor Zhang Wenjuan, director of the hematology department and chief physician of Yantaishan Hospital, said that if patients have repeated joint bleeding and are not treated in time, joint deformities and even disability may occur. Bleeding that occurs in critical areas, such as intracranial hemorrhage, laryngeal hemorrhage, and visceral hemorrhage, can also be directly life-threatening. For this reason, people with hemophilia are often referred to as "glass people".
Before the standard treatment, at its worst, Peng Keyi bleed more than 80 times a year. Sometimes, he felt that something was wrong with a joint in his body, and it could swell twice the size of a normal joint in an hour. The pain is a constant irritation, sometimes for three to five days at a time, sometimes for several months.
One day when he was in the third year of junior high school, Peng Keyi's iliopsoas muscle bleed seriously because of climbing the stairs, and he went home and lay down for nearly two months. With an injury to the iliopsoas muscle and two months of inactivity, he found that he had lost the strength to walk. "Even if you lie down, there will still be bleeding in places. It hurts here and there, and even breathing hurts. Peng Keyi had no choice but to drop out of school and stay at home, completely ending his campus life.
Practice giving yourself an injection and skillfully prick your left hand with your right hand
Peng Keyi's youth was spent lying at home, because at that time, even if he was lying down every day except for eating and going to the toilet, each joint would bleed by itself. It wasn't until 2009 that by chance, Peng Keyi used a symptomatic treatment drug - "recombinant human coagulation factor VIII.", after using it, the bleeding finally stopped, and he slept well for the first time with a swollen ankle.
Seeing the hope of having a cure, Peng Keyi decided to go out of the house and find something to do to support himself. In 2010, when he went to a training institute to learn computer repair, he was in poor physical condition, his left leg could not be straightened, and he could not walk more than 500 meters, so he could only sit on a chair with wheels and slide. The reason why he didn't use a wheelchair or crutches was because he would bleed if he didn't pay attention to his elbow joint.
The left leg is not straight, the left foot is out of reach, and the shoe is padded with a thick heightened insoles, which is the state of Peng Keyi from 2008 to 2017. He also thought about finding a job and saving money for medicine. After attending many job fairs, submitting 170 resumes, and being disheartened by frequent rejections because of hemophilia, he did not expect that in 2011, a company hired him and allowed him to put his medicine in the freezer in the kitchen of the unit.
One day in 2012, before dawn, Peng Keyi woke up in pain. He instinctively sensed that his leg was starting to swell, and tried to touch his foot to the ground, but by this time, he was in so much pain that he couldn't walk, and he decided to try to inject himself.
"I remembered the doctor's action when I was injecting me, holding a syringe in my right hand and inserting the needle into the vein in my left hand and pushing the medicine in. This needle went a little unexpectedly. But the next day, Peng Keyi lost his previous good luck. He had several injections, either not in the veins or bleeding back, and finally he endured the pain and went to the clinic. Peng Ke intended to tell the doctor about his experience the day before, and cried as he spoke. The doctor gave Peng Keyi a demonstration and taught him the skills of injections.
After a long illness, when his left hand was full of needles and there was nowhere to put needles, Peng Keyi also practiced the skill of piercing his right hand with his left hand. Now, whether it is a left hand with his right hand or a right hand with his left hand, he has slowly become accustomed to it and is very proficient. Because he confessed his illness in the unit at the beginning, Peng Keyi no longer had to worry about the strange eyes of his colleagues, he injected himself himself, and the medication was more timely.
The roof leak happened to rain overnight, and life was always not peaceful
Despite the use of the drug "Human Coagulation Factor VIII.", the bleeding finally stopped. However, due to repeated bleeding from multiple joints since childhood, which caused irreversible joint damage, both ankle joints, both elbow joints and right hip joints were diseased, and he could only walk with a limp, so he wanted to have double knee replacement surgery to change his situation.
However, this also became the fuse that triggered the "war" between him and his parents. On the one hand, it is difficult to raise money, parents cannot afford to pay for the surgery, and on the other hand, parents are afraid of the risks of surgery.
In the end, my father finally agreed, and I also crowdfunded some money through the Internet, prepared the clotting factors to be used during and after the operation, and finally had double knee replacement surgery in early 2017. Peng Ke thought that he would usher in a new life, but when he was rechecked a month and a half after the operation, he found that there was adhesion in his knee and needed a second operation. Because of the lack of medicine prepared, which caused bleeding, Peng Keyi was in pain for more than a month this time, and his weight plummeted from more than 120 kilograms to 86 kilograms.
In the second half of 2018, when Peng Keyi's body recovered more and more stable, his life was torn open again. Peng Keyi's mother was diagnosed with breast cancer.
Fortunately, when his mother was hospitalized, Peng Keyi did not have a seizure. His mother went through surgery, chemotherapy, and exercise, and Peng Keyi was by his mother's side and survived together.
Peng Keyi's life did not stop there.
In 2020, my mother was diagnosed with lung cancer. In the same year, his father was in a car accident and suffered an injury to his lumbar spine. Peng Keyi said helplessly: "I used to be the worst physique in the family, but now I have the best physique in the family." ”
Because I've been drenched in the rain, I want to hold an umbrella for others
After battling bleeding for 30 years, Peng Keyi knows that a hemophilia patient may not only be dragged down by himself and his parents.
On World Hemophilia Day 2019, Peng Keyi (left) was invited to volunteer in Nanyang, Henan Province to share his treatment experience
"Because I have been drenched in the rain, I also want to hold umbrellas for more people. In 2020, Peng Keyi officially registered and established Jinan Hemophilia Home, hoping to let more patients and parents understand the active and standardized treatment methods and master the coping methods when bleeding.
Xiao Kun is from Feicheng, Tai'an, and his knee joint has been severely deformed due to the lack of standardized treatment in the past. Peng Keyi suggested that he save up clotting factors in 2022 to facilitate joint replacement surgery in 2023, but he was unable to save up for surgery for some reasons. "Last year, the medical insurance was overpaid during the operation, so I quickly contacted various manufacturers and pharmaceutical companies to help Xiaokun apply for 60 clotting factors worth more than 20,000 yuan, and the operation went smoothly. ”
Peng Keyi (left) accompanies Xiao Kun (middle) for rehabilitation
Later, Peng Keyi helped Xiaokun complete the payment of Jinan's social security flexible employment and solved the reimbursement problem of post-operative treatment. He also helped one of Zhangqiu's big brothers communicate with the Shandong Hemophilia Diagnosis and Treatment Center to adjust the medication for him, and successfully stopped the bleeding. For patients who come to Jinan for surgery or do not know about medical treatment, Peng Keyi will give guidance, and if the body allows, he will go to the hospital to accompany them for treatment.
In the home of blood friends, everyone twists into a rope and helps each other in times of crisis.
In 2020, at a 417 hemophilia event organized by the Jinan Hemophilia Home, Peng Keyi met the teenage Teng Teng for the first time, he was in a wheelchair, his knee joint was swollen, and his mother who accompanied him was very anxious.
"Tengteng did not have standardized treatment before, and the joints used to bleed often, and by the age of 15, the destruction of the joints was very obvious. Peng Keyi used his own experience to encourage Teng Teng to actively treat, and then taught him the effective methods of standardized treatment and rehabilitation physiotherapy, and suggested that Teng Teng learn the necessary skill of self-injection.
"At first, Tengteng's enthusiasm was not strong, until he needed to go to Weifang for the exam during the spring exam, he went to Weifang without medicine and 'ran naked', and as a result, he had joint bleeding and almost couldn't take the exam the next day. Tengteng's mother contacted Peng Keyi in a hurry, and hurriedly took the medicine to Weifang by train, but according to the hemophilia treatment standard, timely medication within 2 hours of bleeding can avoid damage caused by joint bleeding, and it will be too late for my mother to rush over.
Peng Keyi hurriedly contacted the local patients in Weifang for emergency treatment, so that Tengteng could use the coagulation factor in time within 2 hours of bleeding, and did not delay the next day's exam. "After this experience, coupled with my 'scare', his own sense of treatment became very strong, and he quickly learned to self-inject, and is now a senior in Qingdao. ”
Now, what Peng Keyi does most on a daily basis is to answer all kinds of doubts of patients online and help them deal with problems. Sometimes patients will say, "Xiao Peng, I see that you are very experienced, and the questions you answer are very professional." In fact, these are all lessons that Peng Keyi exchanged for with blood and tears. He has experienced an average of more than 20 times of bleeding per year in the same joint, countless painful nights when he can't sleep, because of the high price of clotting factors, he is willing to use it when the pain is unbearable, the pain of surgery and the hardships of recovery...... Peng Keyi often thinks that life would be better without these experiences!
"What I am most afraid of seeing now is which patient or child has unnecessary bleeding, or delays treatment due to various reasons after bleeding...... I still hope that other patients are full of experience, shallow experience, stay away from bleeding and pain, and just live a safe life with the diagnosis of hemophilia, or minimize the impact of hemophilia on life, and return to life and work in the most relaxed state. ”
In Peng Keyi's view, now the standard treatment and various guarantees have made great progress compared with before, if the next step can be to include adult preventive treatment into the medical insurance reimbursement, then the quality of life of the hemophilia group will be greatly improved.
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