Blue lips popularizes pulmonary hypertension knowledge to the public.
A patient was bargaining on the floor to make money on medicines.
Huang Huan wrote a letter of recommendation requesting that drugs for pulmonary hypertension be included in medical insurance.
A patient took care of himself alone in Guan County, Langfang, Hebei Province. Her husband worked outside to make money.
Yulong Snow Mountain has a thick snow cover in winter. Huang Huan, a white-collar worker in Beijing, overtook classes one after another and finally caught up with the companys vacation trip. Snow mountains stand upright, the air is pure and thin.
The next day, Huang Huan put a transfusion tube in her body and looked at the Yulong Snow Mountain facing the hospital window. Her colleagues were still visiting, but she fainted.
Vertigo did not attract her enough attention. Half a year later, Huang Huan, a project manager in one of the worlds top 500 companies, held a full days meeting. The meeting room was airtight. She took all the experts and guests to the elevator, then walked back to the meeting room and fainted again.
This syncope lasted for eight minutes. She heard 120 medical staff say blood pressure is too low to measure, very serious, and the voice is very far, as if from a cave. Other colleagues are shouting for security to control the elevator. Huang Huan wanted to open his eyes and say a word to them, but he just couldnt open them.
Thirteen years after the first vertigo, Huang Huan had a small office in the corner of the First Affiliated Hospital of Guangzhou Medical University for public welfare. She wore a hoodie and sneakers, her hair was as long as she was sick, then cut short and then long, without any special decoration. She doesnt wear makeup. She uses Dabao to protect her skin. She only cares about the important thing. Thats her life.
After staying in hospital three times and fainting dozens of times, Huang Huan was told at the age of 23 that he had a rare disease, which was compared to cardiovascular tumors, without drug intervention, the average life expectancy was only 2.8 years. (At present, after drug intervention, the 3-year and 5-year survival rates of patients are 68% and 57%, respectively.)
At the age of falling in love, marrying and having children, Huang Huan has fought against this disease called idiopathic pulmonary hypertension for more than ten years. She is the first patient in China to undergo two lung transplants. Today, she continues to work with disease in public welfare organizations.
Documentary director Li Rong and Huang Huan met at a friend memorial event and decided to put down the camera temporarily and set up with Huang Huan an organization for pulmonary hypertension patients called iseek to serve blue lips - some patientslips are blue-purple because of hypoxia. At present, there are 67,000 patients in the patients tissue.
Without the disease, Huang Huan might be a mediocre person, Li Rong said, and the disease made her life wonderful. Her doctor said that she admired very few patients. Huang Huan was one of them. She not only ran out of her illness, but also had her own career.
Before becoming an unfortunate member, Huang Huan had a smooth journey. Two years after graduation, I became a project manager in a state-owned enterprise. My job is related to bidding and bidding. I often go on business trips. My luggage is ready to be taken away at any time. I also have several sets of formal clothes for meetings, high heels, 5A office buildings and high-end hotels, and I talk with foreign businessmen about business.
Depending on her nature, she did not want to show up. When she filled in the college entrance examination, she wanted to do less work with people, so she applied to the Agricultural College. When I was a child, I was bored, introverted, timid, poor communication skills, lack of emotional intelligence, reasonable. Mother Li Congling commented on her daughter. Mother was 35 years old before she gave birth to an only child, and father was 43 years old at that time.
When she was ill, Huang Huan suddenly changed her temper. The most unexpected thing for Li Congling was that her silent daughter suddenly rose to speak at a meeting organized by a doctor, full of energy and clear organization.
No patient was scheduled to speak at that meeting. The speaker broke down halfway. Everyone was at a loss. Huang Huan didnt know where the courage came from. In front of the public, he appealed to the patients to write a letter of recommendation jointly to include medicines for pulmonary hypertension in medical insurance.
Idiopathic pulmonary hypertension (IPH) entered the first rare disease catalogue in China in August 2018. It is a progressive increase in pulmonary resistance due to remodeling of pulmonary arterioles and eventually develops into a kind of right heart failure with unknown etiology.
Targeted drugs entered China in 2006, the second year after Huang Huans diagnosis, and she took a pale orange oval pill called Bosentan, a box of more than 20,000 yuan, which could last 28 days. There is also a small blue diamond pill called sildenafil, commonly known as Viagra, which is the cheapest drug to control pulmonary hypertension.
The 100,000 yuan saved by Huang Huan after four yearswork quickly turned into a pill. Even well-off families can hardly afford the high cost of medicine. Once a well-off family, now there is no well-off. Wu Simin, a native of Guangzhou, is a full-time mother with a car and a house. After getting sick, her husband sold the car. She stopped going to the cinema to see movies and went to the supermarket to choose membership days. There is another habit in life: she buys 2 yuan welfare lottery tickets every issue, three times a week, and the number is her birthday combination with her two sons. The light red paper was laid flat in the mobile phone shell, waiting for an opportunity for financial relief.
At the other end of the city, Huangcun, the eastern suburb of Guangzhou City, is at the end of Line 4. Through the underground culvert of the Guangzhou-Kowloon Railway, the village in the city is gradually dazzling in front of us. The houses are scattered in height and style, and they are connected by wires wound in the air. The two tall and thin buildings are only one meter apart, and these old, rough buildings provide Huang Lifangs life-saving money.
Her mothers short hair was white and her waist was bent. She took rent for her daughters treatment.
Just to live, ask everywhere, who has money, can you lend me? Liu Xia lives in a low-rent apartment between the Fifth and Sixth Rings in Beijing. She inhaled a drug for 150 yuan, only two hours, six a day. Can you keep your mouth open and borrow money without shadows in your heart? In the past, they had no worries about eating or drinking, but they could also help others. Now they have lost all their lives. They dont want to contact people at all. People think you are poor and you are sick. They also have many minds. They are afraid of causing trouble to others, which makes people look down upon them. Those who are sick can experience it.
After Huang Huans illness, he saw many patients from other places overcome the difficulties of transportation and accommodation, gnawing steamed bread in the ward. The cost of medicine is so expensive, its not my problem alone. Its not that I have no ability, no money, no medicine, or even feel that my parents have no money to treat my illness and resent my parents. I dont think Im incompetent. I think its a problem with the health insurance system. Its a right I should fight for.
She continued to write letters to the health insurance department and to the mayors mailbox asking for the inclusion of therapeutic drugs in health insurance. Every Monday, I write at the beginning, which is the number of letters I send. How much do I spend on medicine and postage now?
She was in the ward looking for patient signatures one by one, some people do not understand, or even ridicule, Its no use asking grandpa to tell Grandma all day long. Its better to make more money to buy medicine when you have time to write letters.
Huang Huan was diagnosed in 2005. In the hospital room where life and death were decided, the doctor took Huang Huan out and said to Li Congling alone, Your daughter is not very young.
In high school, Huang Huan struggled to run 800 meters. Her classmates dragged her in front and pushed her behind. At the end of the race, she was left in the playground.
She gasped for breath and thought it was asthma. On the day of the first day of the college entrance examination, the examination room was on the third floor. When she climbed up, she felt dizzy. The examination paper was clearly in black and white, but it all looked purple.
Later, she gradually failed to catch up with her peers. There were three decorative steps in front of the company. Girls of the same age carried breakfast, stepped on high-heeled shoes and trotted all the way to the company gate. Huang Huan had to take two steps to rest, which caused suspicion of the security guards.
Beijing Man Street Overpass is no different from a dead end. Her company is just across the bridge from home, but she has to take a taxi to make a detour. Catching up with the crowds, she waved to stop the car, because it could not run, often being cut off. Later, Li Congling had to take a taxi for her, occupy a seat, and wait for her to get into the car.
Asthma is one of the most obvious symptoms of pulmonary hypertension. A patient gathering happened to have no elevator, and a typical patient picture appeared: on each step, a patient stood on his waist and stopped breathing. Imagine breathing that is difficult to calm after a 400-meter sprint. Its the patients daily routine.
Wu Simin, a sick friend, walks with her family, 50 meters behind each time; the daily tolerable walking distance is from the kitchen to the bathroom; the doctor warns her not to exert herself too much when she goes to the toilet; it takes two hours to drag one time; when she cant breathe, I wish I could tear my clothes apart, she grabs the collar and press the collar to death.
Liu Xia, a sick friend, sat halfway through the subway to get out of the platform to breathe; later, the journey out of the courtyard required her husband to carry it on his back, with his head covered like a sack; like a bun stuffed in his chest, he was blocked in a panic. Blood in his body was pocketed by skin, otherwise it would all spill out.
The real example of a deceased patient friend is that she went to see her grandmother, went downstairs and called her grandmother. Grandma, come downstairs, I cant climb up the stairs. The 86-year-old grandmother took the stairs and went downstairs to see her 20-year-old granddaughter gasping for breath.
Because of hypoxia, the fingers of blue lips are thick and thin. The age of patients was concentrated between 20 and 40 years old, and the incidence of female patients was twice as high as that of male patients. Girls wear lipstick all the year round to cover up cyanosis, nails are also painted into powder tender, making the doctor somewhat helpless, said, You can paint, can you leave one for observation?
Huang Huan did not take these into account. After the diagnosis, an ordinary Beijing white-collar opened a double life. During the day, she continued to work, and the company that fainted decided not to renew her contract after the contract expired. Shes been looking for dozens of jobs, only two days at the shortest. During the interview, if you find that there is an irrevocable flyover near the company, even if the conditions are good, she can only give up.
The challenge in the new company is to hide the patients identity while avoiding physical work. Can not travel, climb stairs, never go shopping with colleagues, K song, in case of last resort, there are dozens of excuses to delay the speed of each others walking, such as: foot stump, shoes heels, stomach pain, physiological cycle, pretending to call.
She made up a lot of lies and went home at night, took off her mask, and restored to the patients true character of opening her mouth with food, extending her hand with clothes. For some time, she inhaled oxygen at home and couldnt take care of herself. Every time she finished taking a bath, her mother quickly put a towel on her and let her lie down and breathe oxygen. Once when she was not angry, she tossed in bed like a fish out of the water. Dad supported her. She bit her hard and left two rows of toothmarks on Dads arm.
At that time, there were no therapeutic drugs in China. I started with that list and saw a glimmer of hope. Knowing that she is good at English, a sick friend brought her a list full of English and asked her to translate it. The list was full of medicine names. These drugs can treat pulmonary hypertension.
With these medicines named Centers, she launched an infinite radius search on the Internet. Life is broken into three pieces, working normally during the day, searching for information abroad at night, while contacting patients. Up to now, she can recognize the names of experts mentioned in foreign references at a glance.
By 2008, she had contacted nearly 400 patients in the country. Now, the number has been refreshed to 67,000, while fewer than 10 of the 40 patients she had diagnosed earlier are alive.
Liu Xia is one of them. The newly decorated low-rent house is planted with green radish, and the sunshine shines into it, making it warmer in winter. Liu Xia has survived as the elder of pulmonary hypertension and has seen many deaths on the sidelines.
A 20-year-old girl in the ward, resting in bed after dinner, was making a telephone call. Suddenly, the patient next to the bed found that her bed was trembling and hurried to call the doctor. Mens family members were in a hurry outside. They squatted down, got up, rubbed their hands, went in and out again, and were bombarded by the rescued doctor. I see, in five minutes, no one will be able to do it. When the man heard the news, everybody was dead. When they came to the hospital that day, the girl could walk upstairs.
Liu Xia was particularly afraid of death. When she was in critical condition, she dreamed that she was lying on the drifting disc, with icicles pressing down on her head. Under her head, she looked like hell. People were crowded together, and she was about to fall in. My wife used to say to her, You are timid. You can rest assured that if I dont leave your ashes outside, I will leave them at home.
In order to live, she tried all kinds of ways. After eating five poisons and fighting poison with poison, the living snake stirred up the machine, so a small bottle cant drink without ice ballast. Its too fishy.
She also makes hormones into water and beats them into her body. Normally, she beats up to 50 tablets at a time. She loses a lot of calcium. Her arms and legs ache uninterruptedly. Hormones fall down like waterfalls in her body. People cant feel pain until they are pressed. They can only be relieved by dolantin.
One can think of the way out is burning incense and worshipping Buddha. As long as anyone says there is any hope of survival, he will go with others. If I commit a crime, I can be sentenced to ten years, for example. Well, God wont give you a verdict. Its like thunder at any time.
More than half a hundred people have been ill for so many years. Isnt this failure? Seeing that her peers were in good health, Liu Xia wondered why she had suffered such a crime: Why, I didnt do anything immoral. When frustrated, the curtain does not open, jump off the building without that determination.
The danger of the disease afflicts every patient with this strange disease, and Huang Huan has been in crisis several times. After six months of expensive imported drugs, several years of Viagra and taking part in drug trials for medication, Huanghuans condition deteriorated.
In 2011, a phone call from a family member of a sick friend saved her. The other party has just had a lung transplant, and the effect is good. She is recommended to try it.
I refused at that time, and the operation was too risky. She tossed a coin and hesitated to do it. Another patient in a similar situation was hesitating and tangled, and the patient died.
Not everyone can enter the operating room with a smile. Wu Simin, a full-time mother, saw her sick friend wearing a white skirt dress and a round mouth on her chest in the hospital.
But what Huang Huan sees is hope. I often tell my sick friends that I am afraid of death, so I have to live a good life, there is a glimmer of hope will also strive to live. Sending off one sick friend after another, Huang Huan fainted many times, waking up every time as if he had been separated from the world. She realized, When I die, I may not be able to say a word, and I die. Its not like dying in a movie. Theres an account.
Once again, after fainting in the hospital, Huang Huan was confused. Huang Huan heard her mother calling her name. She seemed to say it in her mouth. What if she couldnt wake up? My feeling is that I have to live.
Before receiving the first lung transplant, Huang Huan was very calm and joked with Li Rong: When Im ready, Ill carry the camera for you. Li Rong also followed up the operating room. Huang Huan leaned against the wall and heard her heart beating continuously.
Im talking to his father about this idea: human life is their own, no one can make decisions for her, even parents. Li Congling said.
Im going to take this medicine. Im going to have a lung transplant. Im going to live. As for how to make money, you have to think about it. Li Congling talked about her daughter. Of all the patients, she is the most special one.
In 2014, there was tension in the corridor of the hospital, and the patient next door shouted, Doctor, come here! Huang Huan cant do it! The physician stood by her bed, using a larger ventilator. A doctor next to her was going to intubate her.
Three years after lung transplantation, Huang Huan experienced rejection. Doctors used hormones to maintain her condition and were not sure how long she would last. In this case, second transplantation should be considered as soon as possible.
Before entering the operating room, Huang Huan was in poor condition, wearing an oxygen mask and very weak. When she changed from the hospital bed to the operating bed, she pushed her legs forward bit by bit.
The doctor shook her hand and she thought in her heart that she must live. Many times, people think its terrible to mention lung transplantation, but you wait a long time until the donor, although nervous, but the thought is that I finally waited, but its time for surgery.
The first lung transplantation cost 5.6 million yuan. Parents raised enough money through relatives and friends. The second lung transplantation was really difficult. When my parents are old, they are usually reluctant to ask for help, but for my treatment, they borrow everything they can. Huang Huans mother hangs her house online to sell, and at the same time looks for a new place in the rental section.
Friends forwarded Huang Huans fund-raising link, with a paragraph to the effect that this is my friend, you can help me, do not know whether to live, at least a psychological comfort. Huang Huan felt uncomfortable after looking at it. He has no confidence in whether I can survive or not. Maybe he feels in his heart that I cant survive, just out of moral and emotional help, just do it, cant pull down.
At that time, everyone around Huang Huan did their own work, as if they were completing a project together. Nobody had time to feel sad. Parents are busy raising money, Li Rong seeks medical advice, Huang Huan is wearing a respirator to make phone calls everywhere.
She was the first patient in the country to have two lung transplants. There was no domestic precedent. She went abroad to seek help. The American Patient Organization of Pulmonary Hypertension helped her connect with a predecessor, an opera actress who gave a speech and sang an opera in TED after her illness.
In an e-mail, the opera performer told Huang Huan what to pay attention to in the second transplantation, such as expectoration, is very important. During the rehabilitation process, Huang Huan consciously cooperated with the doctor to cough phlegm, although the process was not pleasant.
To make matters worse, Huanghuan was also infected with hepatitis C. She waited for three weeks and put on the name of the top domestic hepatitis C specialist. The doctor said, My hair is white. I saw the first hepatitis C patient who had lung transplantation.
At that time, there was no medicine for her in China. The doctor said, Go back first and save some money. The medicine may be very expensive. Huang Huan did not leave. She turned out an article from her mobile phone about the drugs for hepatitis C that would soon be on the market and asked the doctor one by one if she could take them. If I hadnt brought that article with me, I might have come out in three minutes.
Doctors who understand hepatitis C do not necessarily understand lung transplantation, and vice versa. She translated the case into English and asked foreign experts for help. American doctors, Canadian doctors, Hong Kong doctors and Mainland doctors formed a temporary Wechat group for her to discuss treatment options. She also asked Japanese doctors to buy special drugs for hepatitis C, which are not yet available in China, at a high price. At that time, when the iPhone 6 was just on the market, Huang Huan ate an iPhone 6 one day.
Even if the treatment is troublesome, Ill try to find a doctor and medicine. Doctors dont know what to do, so I push doctors to communicate with each other. I dont wait. I do something real. After recovery, Huang Huan expressed his gratitude to the doctor, but the other side said, Its you who made a way for yourself.
Huang Huan manages her body like an unsuccessful project. Every time she sees a doctor, she can answer all the indicators in a fluent way. Li Rong said that she took medicine like launching a rocket every minute. She went to bed at 10 oclock every night, and the thunder couldnt move. As long as the appointment to see a doctor is made, even if the work is not needed, it is necessary to go to see the doctor.
She said that at any time, the right to life is the first. When Im not in good health, I always put down my work to rest or treat.
The money for the second lung transplant was collected through donations. The media reported that Huang Huan set up a public welfare organization to promote medical insurance and raised more than 1 million yuan in charity. At that time, in the ward, Li Congling heard the radio every day asking her to go down and get money. An old man, wearing ragged clothes and walking very difficult, insisted on donating 2000 yuan to Huanghuan. Li Congling refused to accept it. The old man threw the money on the ground and left. Up to now, she doesnt know each others name. You save others, the whole society is saving you.
In 2016, Huanghuan suffered a very serious infection after two lung transplants.
It used to be a step-by-step improvement every day, and this time the doctor was helpless. The cause of the disease has been examined once, and there is no eyebrow. Take medicine to eat stomach bleeding, Huanghuan above the blood transfusion, below the blood pull. A lot of dark red hairs grew on the body, big circles around small circles. Feet can not be vertical, 24 hours covered with ice bags, otherwise the pain will be unbearable. The weight of the shoulder blade is as thin as two small wings.
Li Congling never thought that the child would die. At that time, she was discouraged and said, The child cant live.
Huang Huan spent more than three months in the hospital. The window of the single ward was facing the school court. Sometimes many people could be seen exercising. When the weather is good, its comfortable to open the curtains. But for some time, Huang Huan has a fever every day, and the sun shines on his face more uncomfortable, so he gradually dislikes the sunshine.
Infection that time, from the Concorde invited experts, Huang Huans eyes immediately shine, I told her,You are afraid of death. Li Rong recalls.
There were sick friends and parents coming to see her. Li Congling was busy receiving her. The sick friend said, If I give up, and the parents said they would give up. Li Congling answered, If the patient does not give up, how can we give up?
The pain of the body may be solved by changing the lungs, but the devil is hard to get rid of. My parents feel ashamed to take care of me when they are old. When walking slowly and blocking the road, Huang Huan feels that he is in the way, affecting others.
After fainting, she found that the mess still had to be handed over to her family to clean up. When she accepted the care of her parents, she felt calmer. My strongest wish at that time was to live.
Shame is one of the psychological problems of patients. Some highly educated patients will silently donate money to Aishi, but do not forward links. They feel disgraced by illness and are reluctant to reveal their identities.
Others resisted oxygen inhalation, believing it meant getting sick. There are even Japanese patients who are afraid of getting fat without taking hormones, and some who refuse to carry the injections because they dislike the beauty of the injections.
In a coffee shop in Guangzhou, Wu Simin took off a dark coat with a light blue mask in her pocket.
Disease has become a part of her body and cant be taken off like an overcoat. On the side of her stomach, an injection called Quqianlienil is pouring into her body. It is connected to a walkman-sized device. She must wear it 24 hours. No launching, no flying, no explanation when she has passed the security check.
Before entering the hospital, she did not know that she had been sentenced to death. After discharge, Wu Simin raised her eyes to see the Pearl River. The cruise ship was still traveling slowly on the river, and the world was still running. Only she was different from the past.
During one or two nights of insomnia, the lights in the hospital corridor turned off, and the lights in the room turned off. Upstairs came the sound of click and the sound of nursesfootsteps and wheels rubbing against the ground alternately appeared. Wu Simin began to worry about the future. What about my son and my mother? Let my husband find a second one and take care of two children?
During the hard time of hospitalization, she wondered if she would send a circle of friends to tell you that the letters were typed in the memorandum, but one after another deleted, I dont know what they think of my two sons.
Wu Simin used to be short-tempered and aggressive, but now the most enjoyable time is to watch her two sons play car and fight on the soft cushion under the sofa. At the very least, I have to watch them go to college. I have to go to high school when Im not a student. She intentionally teaches children, the closest relatives are brothers or younger brothers, mother ranks second. Mother is not here, so we need to discuss something with each other in the future.
During that time in the hospital, my mother cooked different soups every time she came. She held back her tears and comforted her mother. Im sure Ill live longer than you. Ill watch you die.
In the pulmonary hypertension circle these days, there is a heated discussion about the event that a patient gave birth to a child desperately. Some people see hope because of this, and some people complain about her selfishness and what to do after the birth of the child.
What foreign countries are thinking about is how to overcome young peoples diseases and let them create value. Huang Huan said that Chinese patients had long been sentenced to death by the society.
Huang Lifang, 30, has low hair tied behind her head. She appeared in the infusion room of Huangcun Health Station in Guangzhou, wearing pink cotton-padded clothes and sleeves. She is experiencing a cold that has lasted for more than a week. The disease makes her 1.5 meters tall and weighing 40 kilograms look smaller, easily drowning in the migrant workers who come and go in Huangcun.
The last time I saw my child was May 23, 2018. Because of illness, she got involved with her husband. The 5-year-old daughter was abetted to drive her mother away. The children passed by her, covering their mouths and calling her neurotic.
She sleeps in separate rooms with her husband. The firewood, rice, oil and salt are separated. The room she used to live in has been locked and kept from being admitted. Daughters sometimes see her cooking, fragrance spread, will hide in the door to peep.
Her tweet head is a picture of her daughter laughing with food on her mouth, and she can see it dozens of times a day. After the last meeting, my daughter went to kindergarten. The first thing she did was to tell her teacher that she met her mother. Speaking of this period, Huang Lifangs frustrated face could not stop bursting into tears.
Who can endure such a long absence from his daughter?
In the dark room, Huang Lifang likes to listen to Deng Lijuns Small Town Story, and her voice sings There are many small town stories, full of joy and joy. She lay alone in bed crying.
Among Huang Huans patients, because the patients look like ordinary people, some rural patients are also considered to be pretending to be sick and avoiding farm work. In the counties and cities of Hebei Province, some people refuse to see their children, saying they are afraid that they will not be able to marry after they know they are ill. There was a patient who opened a snack bar. The villagers warned the children not to go to her shop to buy things for fear of being infected.
Patients generally feel abandoned by society. Their peers go to school, work and fall in love. They survive life and death year by year. They dont know how to check the courier number and dont send e-mail.
In Huang Huans later circle of patients, about one third of them were told from an early age that there is no cure, no medicine. Parents take their children home and try to satisfy the need for food, drink and play, while another healthy child is strictly required - sometimes doctors will tell the parents of younger patients directly to return home to have another child, and can immediately issue a proof of fertility indicators.
A family member of a patient was told that her child would die at the age of four. At the age of four, she was very nervous and slept with her child every night. Later, he said that children would die in their teens and in their twenties... When the child is in his 30s, his family laments that if they knew it well enough, they should let him read and study.
Huang Huan identified herself as a patient. She traveled in a wheelchair and showed the diagnostic certificate and the blue lips manual to the Metro staff. She has seen countless outsiders rush to see the doctor, seeking hope for life in Chinas first-tier cities, queuing up an expert number all night and crowding the family in a small hotel near the hospital. She gathered patients like Wu Simin and Huang Lifang in a group. Death is a powerful catalyst that allows people who dont know each other to shed tears of sympathy.
Aiming at these psychological problems, we organize psychological classes and engage in various activities. An aunt had not been out of the house for nearly 10 years after her illness. She learned to use Wechat after participating in the activities of her sick friends. Her daughter works for an IT company and wonders when her mother learned to chat online.
Hope to eliminate the loneliness of patients. Huang Huan remembers that one time after the psychological group activity ended, a patient who had not said a word during the whole process said, I feel very comfortable, even silent.
On a business trip in Hebei Province, Huang Huan lamented Yan Zhaoduo, a generous and tragic man. Many people have strong hopes for life, but they seldom express themselves and lack a reasonable way to express their demands. She recalled the silent yellow hair in the movie Im not the God of medicine. Many of our Chinese patients are so angry and dissatisfied. Most of them hold back and endure it. If they fail, something serious will happen.
Li Rong said Huang Huans attitude was mild and calm, not outraged, but still powerful. Most of the time, the response to her letter was, We have received the questions you have reflected.
She had psychological expectations and was not very depressed. Nobody knows if you dont write, and nobody cares if you dont do anything?
Aishike has sent questionnaires to patients. The results show that more than 90% of patients have been misdiagnosed or missed the best treatment opportunities. 85% of patients can not afford the high cost of treatment and drugs. 75% of patients are in a state of recuperation or no stable income. Many children have lost the opportunity to receive education.
One of her doctors was a representative of the National Peoples Congress. She drew up a letter of recommendation, which was handed over with a certificate of deputy to the National Peoples Congress.
In 2006, Huang Huan was interviewed by the Beijing Medical Security Bureau. The other partys reply was that the medical insurance catalogue in Beijing had been adjusted once in five years, which had missed the time. In addition, this rare disease did not belong to the basic requirement of medical insurance.
At first, she wrote only about her illness. After setting up a public welfare organization, Love Rare Guests, she wrote about how many patients are currently taking, what medicines to take and how much money they need. These people can work by taking medicines normally.
Liu Xia looks forward to the inclusion of medicines in medical insurance and admires Huang Huan. Everything I do is thinking of her spirit. I dont have the ability. When I call someone, they say that they dont have enough conditions, and then they come back to you.
In 2014, on World Pulmonary Hypertension Day, Aishike held a symposium on social support and health insurance policies for pulmonary hypertension in Beijing.
The patients right consciousness is awakening. In the past, people were unwilling to sign letters or pseudonyms. Huang Huan felt that he was fighting alone. Now, she supports patients from all over the country to write separately to the local health insurance department.
At present, pulmonary hypertension drugs in Shenzhen, Qingdao and Shenyang have been included in medical insurance.
The governments attitude is changing. It can cooperate with commercial insurance and pay in many ways. There are feasible plans.
Huang Huans earliest Bosentan has dropped from more than 20,000 yuan to more than 4,000 yuan. After the medicine was included in Shenzhen Medical Insurance, patients only need to pay more than 1,000 yuan.
In 2013, Beijing also included anti-rejection drugs after lung transplantation in its health insurance system, which dropped from 5,600 yuan a month to more than 200 yuan a lifetime. Huang Huan stared at the new policy of medical insurance during the two sessions in Beijing, saw the news and jumped up excitedly.
The development of rare diseases requires that patients, experts, doctors, the government, the media and society unite to appeal for and demand rights. Xiong Changming, deputy director of the Pulmonary Vascular Disease Diagnosis and Treatment Center of Fuwai Hospital, Chinese Academy of Medical Sciences, found an article from his mobile phone and showed it to reporters. At the World Conference on Pulmonary Hypertension, a conference document wrote about pulmonary hypertension from the patients point of view, which mentioned that Chinese patients organize rare visitors.
Xiong Changming has always supported patient education activities and signed a letter of recommendation jointly. He went out four times a week in Fuwai Hospital. There were 80 patients a week. About 60 of them were pulmonary hypertension patients, and most of them were elderly patients.
Whether it can be cured and how long it will last is the most frequently asked question of patients. Some therapeutic effects are good, but the follow-up patients have no money, can not afford drugs, the most distressing.
Some patients shout Help when they come in, while others are misdiagnosed. Although you have done nothing, you really feel that you have saved the lives of a family.
Pulmonary hypertension, known as cardiovasculartumors, has a tremendous impact on a family. Xiong Changming did not say to patients that there are still a few years to live, but he encouraged them. Some patients come in in in wheelchairs, and he tells them, You stand up, you can go downstairs.
We need a doctor to speak with us. Huang Huan said that the doctor would invite her to attend the academic conference. After her speech, some doctors contacted her voluntarily.
I often wonder if Im doing something right. In China, its very difficult for patients to participate in the treatment process, but the direction of joint decision-making between doctors and patients is right. Pushing health insurance is the same. Years of no results, unlike in the movies, the sick friends are so united to support the Pharmaceutical God.
Her deepest impression of the film was, Im not wrong to live.
Liu Xia cried several times when she saw the movie, but she comforted herself, If money is gone, I will live for a dollar a day. As long as I live, God will not leave you rich and poor. Her recent pleasure was that the physiotherapist said that the toxin accumulated in her body would just be rubbed open. Say Im a good person, not a patient.
Huang Huan once heard a lecture on public welfare. The teacher said on the stage that if there was one thing you were thinking about at night when you slept, it would soon be over.
Huang Huan wants to set up a public welfare organization since he got sick. In the absence of drugs, it was the patients English list that gave me hope; in my poor state, it was the patient who called me to tell me that I could have a lung transplant. The money for treatment is important, and so is the information. The daily work of Aishike is to answer the hotline and respond to the correct and timely treatment information.
Huang Huan was still at work when the organization was preparing. She sent her mother, Li Congling, to attend lectures and take notes.
They are all young people. For an old lady with white hair, I have never touched this before, and I have to do accounting and auditing, which is particularly troublesome. To tell you the truth, I dont support her very much. Its difficult to walk and do such a big thing. Li Congling said that the organization may be doing it, and no one will be there. But on second thought, Somebody has to do it. She wants to do it again, so she wont regret it.
In the first year, on the streets of Beijing, Aishike organized activities with students from the Third North Medical College. The exhibition stand was only two tables large. Now they have free clinics in 20 hospitals, and red flags are posted on office maps, which are the footprints of cities they have traveled and want to develop.
Our goal is to solve the problem of such rare patients and try to avoid regret. Li Rong said.
At its peak, there were 78 Employees in the organization. Today, only two of them are the regular employees who love sparse customers. Employees should also consider their salaries, dont want to kidnap employees with charity.
The information we provide is so valuable, but others think your work is worthless. We have helped a lot of people, but they think you are begging. Huang Huan said that the time when the Organization raised the most money was when she was most ill. Im sure I cant live without your help. Im grateful. But from an institutional point of view, I feel sad that only when I am dying can someone donate money. What we are doing so hard has not been recognized enough.
In the past, people always said to Li Rong, What kind of public welfare can we do without money? Li Rong was very disgusted. I can raise money from others. Isnt it good to help people?
I agree with them in recent years. Sitting in the office of a rare visitor provided free of charge by the First Affiliated Hospital of Guangzhou Medical University, Li Rong repeated, Do you understand what I mean?
Now they are charging VIP members 365 yuan a year to provide cheaper group-buying drugs. Some voices have complaints about fees. Li Rong said his pre-tax salary was 6,000 yuan.
What we are doing now is not to be completely separated from business. Foreign patientsorganizations are profitable as long as they dont bring dividends. Huang Huan predicts that aiming at the future development of medical field and drug research and development, Aishike can provide corresponding data to realize commercial liquidity.
Huang Huan doesnt put herself at the top of morality. Sometimes she says,If its so difficult, dont do it. Li Rong said, Love rare customers is the growth of Huang Huan and me.
Mom, am I particularly silly? Huang Huan asked Li Congling, Since I was sick, I have not had as many thoughts as other patients. I cant live or get married. I dont have any. If you have a disease, treat it. If you dont, how do you know if you can live or die?
She never complained, frustrated or cried in front of her parents. When you get sick, youre so young, 23 years old, alive and flesh, you cant have no emotion.
Li Rong had planned to make a documentary about pulmonary hypertension. Huang Huan laughed in front of the camera and told a story about her illness. On one occasion, Li Rong invited Huanghuan to her home without her parents present. As she spoke, she shed tears. Suddenly, her mother called and she returned to normal.
Li Congling and her wife have just paid off the money they borrowed from relatives and friends on their retirement pension. The old couple lived in deep and simple, joking with their daughter, If you dont get sick, well be rich.
They came from Beijing to Guangzhou to spend the New Year with their daughter. Whether she works well or not has nothing to do with us. I worry about her body. Li Congling always feels that there is a time bomb. She needs to save another 200,000 yuan. In case something happens, she can take out the money at the first time. Her father was more amusing, saying we had to save 300,000 yuan.
When preparing to set up a public welfare organization, a doctor told Huang Huan, You cant save yourself by setting up this organization. She said, I just want to do this well. I help others. They give me information. I can integrate all the resources at the most critical moment and save myself in the end.
Outside people heard her story and thought Huang Huan was miserable and had experienced so many twists and turns. But in the eyes of patients, Huang Huan is very lucky to be able to transplant when transplanting, and many people donate money to find medicine when they need it. Huang Huan said that this kind of luck is for the prepared people.
Huanghuan is said to be a miracle. She doesnt like the word very much. I survived without any special greatness or hardship. Its my instinct.
(Huang Lifang, Wu Simin and Liu Xia are aliased in the article at the request of the visitors.)
Source: Han Jiapeng_NN9841, Responsible Editor of China Youth Daily