On social platforms, more and more young people are posting asking: "I am only in my twenties, diagnosed with uremia, how to treat it?"
Uremia is the advanced stage of kidney failure, in which the patient's kidneys are no longer able to function, resulting in metabolic disorders, renal hypertension, anemia, diarrhea and vomiting, etc., if not treated in time, it will slowly develop into systemic failure and eventually death.
At present, there are only two types of treatment, lifelong dialysis, or kidney replacement. In addition to the high cost of surgery and kidney purchase, you need to take anti-rejection drugs all the time in the later stage, and there are always many hidden dangers in organs that do not belong to you.
To a certain extent, uremia is equivalent to pressing the rest of life.
On the mainland, the incidence of uremia is about 170 patients per million population. Up to 40% of uremia patients are young between the ages of 10 and 30.
When a young person suffers from a serious illness at the beginning of his life, how should he find a balance between the never-ending treatment and the development of his life?
In the spring of 2023, 23-year-old Ulala went to Chengdu People's Hospital with her boyfriend at the time to see a doctor, and it was only a few days after the Spring Festival, but her health deteriorated and she had to leave home to go to a big hospital for a comprehensive examination.
As early as half a year ago, Ulala's body had problems. The little niece wanted to practice her photography skills and invited Ulala to be her model. During the filming, Ulala felt dizzy without warning, with a cramping pain in her abdomen that she had never experienced before, and she felt like she was fainting to death.
The photography teacher next to her pinched Ulala's mouth and fed her chocolate candy before she barely woke up.
She had a routine blood test at the local county hospital, which showed that she had a hemoglobin of 80 and mild anemia, so she bought three months of Chinese medicine from a Chinese medicine doctor with a good reputation to replenish her blood.
Even though she has been taking medication, her body still has not recovered, and she is often dizzy, numb, nosebleeds and bruises for no reason. The coronavirus at the end of the year made her already fragile body even more overwhelmed, she felt nauseous all day long, and she couldn't swallow any food despite being hungry.
Ulala went to the county hospital again to check his stomach and intestines, and found that there was no major problem. At that time, she was already very weak, and she had to stop and catch her breath after walking a few steps, and finally decided with her boyfriend to go to Sichuan Provincial People's Hospital for a more comprehensive physical examination after the Chinese New Year.
Ulala
At the hospital, she first had a blood test, and the normal range of hemoglobin for adult women was 110 to 150 grams per liter of blood, compared to 46 for Ulala. Since there were no beds in the hospital, she needed to be transferred to a private hospital, and when the hospital received a call, her first reaction was whether she needed a stretcher because her haemoglobin levels were so low.
At ten o'clock on the night of hospitalization, my boyfriend was called out the door by the doctor to talk, and when he returned, he sat on the camp bed and slid around with his mobile phone, as if searching for something. When Ulala asked her boyfriend a little anxiously, the boyfriend reassured: "The doctor said that it may be a little serious, but it shouldn't be a big problem." ”
Ulala was discharged the next day and returned to the hospital near his home, where his creatinine was found to be more than 1,000.
Creatinine is a metabolite that needs to be excreted in the body through urine, and creatinine content is one of the important indicators to measure the filtration function of the kidneys. The normal creatinine for women is 44 to 97.
When the hematology doctor saw the indicator, he immediately took it to the nephrology doctor, and while they were talking, Ulala faintly heard the word "kidney failure".
The doctor did not draw conclusions about her condition that day, only when she left the hospital, she searched for "kidney failure" on her mobile phone, and the first thing that came out was: "How many years can you live with kidney failure?"
In 2023, Ulala will only be 23 years old and in his junior year. Misaki was only 25 years old when she was diagnosed with uremia.
Misaki and her boyfriend planned to get married the following year, and when they returned to her boyfriend's hometown of Xinjiang, she had a premarital medical check-up. A month later, she received a phone call at home and was told by a doctor that her creatinine had reached more than 500, which was well above normal levels, and that she needed to go to the hospital for a closer examination.
Creatinine is an unfamiliar word to most people, and Misaki still panicked when she heard the serious tone on the other end of the phone, and immediately went to the hospital with her boyfriend for a check-up.
The doctor who examined her looked at the results and asked Misaki several questions one after another: "What is the family's condition? Is the financial situation good? Do you have any siblings? Where did you go to college? How did you get this disease?"
This string of questions sounded almost indistinguishable to Miaki from "preparing for the aftermath", and she cried directly in the hospital. Misaki's boyfriend wanted the doctor to comfort her, so he asked, "How can I be cured?"
The doctor was very unappreciative and replied categorically: "It can't be cured!"
Until she left the hospital, Misaki still didn't stop crying, except for deciding not to delay her boyfriend and break up with him, she had no plans for her future life.
After determining her condition, Ulala retraced her life experiences again and again, and explored the signs of her illness that had manifested itself.
She was shocked to realize that her body had already sounded the alarm bell for herself countless times, but she always thought it was anemia, so she didn't pay much attention to it.
For example, dizziness and numbness in the body should be caused by impaired kidney function and high potassium levels in the blood.
Nosebleeds, bruising, because uremia severely impairs the coagulation function, and the blood vessel walls are prone to rupture and bleed.
The color of the urine is light, close to the color of mineral water, because the potassium and phosphorus in the body are not eliminated by the kidneys.
......
Ulala
Before she was diagnosed with uremia, Ulala had always been optimistic about her body perception and was "ahead of her peers". She is a regular exerciser and runs in the school playground almost every night. At night, they basically go to bed before 12 o'clock, and the roommates usually play with their phones until three or four o'clock.
In the sophomore physical education class, more than 60 people in the class ran 400 meters together, and Ulala ran at the front.
In her recollections, she was sure she had a bad habit that she didn't care much about. Because of her timidity, she didn't dare to get up at night to go to the toilet, and often held her urine all night. Later, a young uremia patient in the same city communicated with her and found that the other party also had the habit of holding urine.
At that time, Ulala was lucky, thinking that holding urine was not as terrible as rumors on the Internet, but Ulala's analysis showed that it was at least an important cause of damage to the kidneys.
The bad lifestyle habits of young people increase the burden on the kidneys and become one of the causes of uremia, such as staying up late, holding urine, and eating oily and sweet takeaways.
The average sleep duration of mainland residents is 6.75 hours, and 28% of the population does not sleep more than 6 hours at night. Among them, the average time for "post-00s" to fall asleep is 00:33.
Ji Qingyue
Unlike Ulala, who only has the bad habit of holding urine, Ji Qingyue's "use" of her body is almost harsh.
When she was a child, she went to Shanghai with her working parents to study, and did not return to her hometown in the northwest until junior high school. Her mother told her that if she wanted to return to live in Shanghai, she needed to study hard and then be admitted to Shanghai for further study.
In 2008, 12-year-old Ji Qingyue took her mother's words to heart, got up at 5:50 in the morning and went to bed at 1 o'clock in the middle of the night.
Slowly, she gradually lost her appetite to eat, and after going to the hospital to check her stomach and intestines, she found that there was no problem, and she no longer took it to heart.
One night in 2010, Ji Qingyue's mother decided to sleep with Ji Qingyue as if she had an omen, and at half past twelve in the middle of the night, Ji Qingyue suddenly fell ill, angina pectoris, and couldn't breathe, and Xiaoyue's mother hurriedly took a taxi to send Xiaoyue to the hospital for rescue.
That night, the hospital thought she was just severely anemic, until the next day, when the whole body examination was completed, the creatinine had reached 1300. On the way back to her room after the B-ultrasound, Ji Qingyue heard the doctor tell her mother that she could only live for three months.
Influenced by her mother's belief in Buddhism and her love of reading, Ji Qingyue at that time was precocious beyond the age of 14, and she enlightened herself: People die early and die late, and they can live one day at a time. She picked up the paper and pen in the ward and wrote down a sentence: Everyone comes to this world by passing.
When she was first hospitalized, Ulala chatted with her aunt in the same ward. My aunt is also a uremia patient, and five years after the kidney replacement, she had kidney problems again and needed to rely on dialysis in the hospital.
The aunt euphemistically mentioned to Ulala that Ulala's boyfriend should be changed to a girlfriend.
Hemodialysis, also known as artificial kidney, leads the patient's arterial blood out and flows into the dialyzer through the pipe, where it undergoes diffusion, osmosis and ultrafiltration to return relatively clean blood to the patient through the pipeline and from the veins.
In order to maintain physical stability, patients usually undergo dialysis two or three times a week, which takes four hours at a time, disrupting the normal rhythm of life and making it difficult to go to work.
Ulala half-tentatively and half-jokingly mentioned her aunt's suggestion to her boyfriend, but she didn't expect her boyfriend to agree very easily. Ulala subconsciously always thought that they would get married in the future. They were together in their first year of high school, repeated their studies together, were admitted to college, had conflicts and separated halfway, and got back together, and they were together for nearly five years.
When they were together, her boyfriend did her best as she could, and there were no regrets in this relationship, so Ulala felt even more disappointed that her boyfriend immediately agreed to break up. At the same time, she can also understand her boyfriend's choice, staying with a uremia patient for a lifetime, it is not impulsive and committed to do it, and behind the marriage is two families, even if the boyfriend is willing, can the boyfriend's family accept that the son's object is a uremia patient?
Even if her boyfriend doesn't break up, Ulala will probably separate from each other with the idea of not delaying each other.
In the face of the breakdown of this relationship, Ularada led himself a lot, and still shed tears while lying on dialysis, "(Tears) are like water in a water pipe, flowing down the corners of the eyes on the left and right. ”
But Ulala's father was always by her side, telling his daughter that even if he smashed the pot and sold iron, he would cure her.
Ulala on dialysis
Misaki's boyfriend decisively refuses when he hears the breakup request. He called his mom, a doctor, and took care of his grandmother, who was suffering from uremia, for years.
Her boyfriend's mom told Misaki on the phone that she should stay engaged when she should be, that "two people who really love each other have to spend time together, no matter how difficult they go through," and that it doesn't matter if they can't even have children.
Misaki's parents have always supported her: "Don't think too much, we'll treat well." If you want to change your kidney, your mother's will give it to you. You are the meat of Mom's heart, and it is useless for Mom and Dad to let my baby suffer outside alone. ”
The support of the people around her made Misaki feel even more pressured, she didn't want to drag down her boyfriend's good future, and she didn't want to use her parents' bodies to prolong her life, or use hundreds of thousands of dollars to buy and replace kidneys, and in the end, "she can only live for ten years".
Matching is required before a kidney transplant, but even if the matching is successful, patients may still have severe rejection after kidney transplantation. In addition, after kidney transplantation, because patients need to take immunosuppressants for a long time, their immunity will be weakened for a long time, and it may lead to various complications such as diarrhea, high blood pressure, and hyperlipidemia.
Screenshot of Misaki's boyfriend chatting with her boyfriend's mother
She posted her pain online and unexpectedly received comfort from many young uremia patients. She never imagined that so many young people would be so seriously ill.
A Chinese girl living in Japan, three years older than Misaki, sent her a private message saying that she had been diagnosed with the disease alone in Japan four or five years ago, had been in the intensive care unit for a long time, and had a relative transplant with her mother last year. After surviving a long night of crying alone in a hospital in a foreign country, she told Misaki what to do next, how to treat it, and comforted her by saying that in addition to going to the hospital regularly, the rest of the time is free and no different from others.
This netizen's experience has given weight to her comfort and advice. Misaki was confused and didn't know how to move forward in the future, but gradually gathered courage in the message box full of kindness.
There are also many girls like Misaki online, who posted in a panic when they were first diagnosed with uremia, hoping to find someone of the same kind. Ji Qingyue is usually the one who appears in the comment area and gives comfort.
She has been on dialysis for 15 years since she was diagnosed with uremia at the age of 14, and has been with uremia for longer than she has been healthy. Under the anxious posts of netizens, she was like a confidant big sister, patiently telling her own situation and reassuring the other party that it didn't matter as long as she was treated well.
On social platforms, young uremia patients weave a comfortable net, the sick people are so unfortunate, but they comfort and support each other, connect each other by pain, and give back each other's warmth.
Ji Qingyue's entire arm is covered with scars, which are the marks left by years of hemodialysis. She never tried to cover up, but in the summer, she wore short sleeves to show her trauma.
For Ji Qingyue, this is her medal, and it is a commemorative symbol of her will to survive and overcome her illness again and again.
Ji Qingyue's scar
Ji Qingyue was sent to the hospital for rescue a total of 4 times.
Her initial treatment was peritoneal dialysis, in which dialysate was injected into her peritoneal membrane to remove toxins from her body. Compared with hemodialysis, which is chosen by more people, peritoneal dialysis does not require a trip to the hospital, and the time is relatively free and the price is relatively cheap.
The home could not achieve the same completely clean and sterilized dialysis environment as the hospital, and Ji Qingyue was sent to rescue due to an abdominal infection half a year later. Another rescue was when I had a fight with my mother the night before, and my blood pressure suddenly spiked, which was so serious that I lost my eyes for a short time.
The most serious time on the way, Ji Qingyue's mother had already called the crematorium and sent Ji Qingyue's clothes over.
During the last rescue, in order to prevent Ji Qingyue from biting off her tongue in the middle of the seizure, the doctor gave her a tranquilizer at half a dose each time, a total of five and a half doses, which has exceeded the safe dose, and even if she wakes up, her intelligence may only be at the level of five or six years old.
Ji Qingyue's memory is beyond ordinary people, she never forgets it, in order to protect her memory, she will refuse to inject anesthetic when stitches, and she has carried the pain. But this time, her memory was severely damaged, and she forgot her father and how to write. Ji Qingyue lost what she thought was the most precious thing when she was a teenager, and she almost wanted to give up her life.
In order to recover her memory, she repeatedly did painful mechanical training, and her mother asked Ji Qingyue to recite Buddhist scriptures repeatedly and memorize obscure language. Because of the side effects of the tranquilizer and the prolonged bed confinement, her muscles had atrophied and she needed to learn to walk again with a walker.
In order to better treatment, Ji Qingyue returned to Shanghai, she thought that the next time she came back, it was to hold the notice of the ideal university, but fate would play tricks on people, she came to treat the disease, and she also lost the opportunity to study.
Because she sees a doctor in a different place and has no medical insurance, Ji Qingyue has to bear 12,000 yuan in medical expenses a month. Ji Qingyue often thanked herself for "having a particularly awesome mother". When 6-year-old Ji Qingyue followed her mother to Shanghai, her mother was still a waitress in a restaurant, responsible for serving dishes and cashiers, and when she left Shanghai at the age of 12, her mother had already achieved the position of marketing director.
In 2022, Ji Qingyue inscribed the words for her mother
In order to treat Ji Qingyue, after Ji Qingyue's mother returned to Shanghai, she worked three part-time jobs while doing business, and she became Ji Qingyue's strongest backing.
After surviving the breakdown period when he first learned of uremia, Misaki's state was almost tense and stable.
Before hemodialysis, the patient's wrist needs to be cut to connect the veins and arteries together, so that the veins and blood vessels can grow rapidly, so as to speed up the blood flow rate and facilitate hemodialysis.
The wound near the wrist was left by Ulala's arterial and venous connection surgery
While waiting for the arteriovenous connection, Misaki attached a temporary tube to his leg for dialysis during special periods. Due to the obvious rejection of the tube that was suddenly implanted in the body, Misaki was uncomfortable, and her boyfriend was away on a business trip and there was no one to take care of her.
A rare breakdown rediscovered Misaki, and a netizen comforted her with her own story. When a netizen was diagnosed with congenital closure of the vagina when she was a child, her mother chose the treatment plan of artificial vagina, and in order to prevent the wound from closing, she needed to stuff new gauze soaked with iodine and alcohol into the wound every day.
After graduating from college, netizens were ready to get married, but on the day they tried on the wedding photos, they found that their feet were swollen, and they were found to have a single kidney in the hospital, and they had advanced kidney failure, and their fiancé ran away overnight.
Netizens are currently receiving subsistence allowances, earning income by live broadcasts, and are saving money for their kidneys.
Misaki's previous life was relatively smooth, but after suffering from uremia, the world seemed to tear a new hole in her, giving her a glimpse of an even more embarrassing life. Suffering should not be a necessary option in life, but life has progressed to this point, and we can only strive to move on to the road of survival.
After falling ill, Misaki quit his job as a designer with a monthly salary of 30,000 yuan and became a social idler. She and her boyfriend postponed their original marriage plan due to illness and also got married in February this year. Today, her condition is stable and she needs five dialysis sessions every two weeks.
My boyfriend's job requires traveling everywhere, and Misaki will go with him, and in the past few years, I have been to Xi'an, Dali and other places, as if I said with my Japanese sister, except for going to the hospital, the rest of the time is free.
Of course, every time you go to a city, you need to call the local hospital in advance to make an appointment for dialysis time and bed.
At present, she has saved 400,000 yuan for kidney replacement and follow-up treatment, and is queuing up in the hospital to wait for the kidney source. When talking about her illness, she always talks about it positively and happily, as if her illness has not affected her much.
In fact, at night, Misaki still can't help but wonder, why is it me, why is it that I have encountered such a thing?
Misaki and her boyfriend in Lijiang
In order to survive, Ji Qingyue spent most of her time battling uremia, and now that her body has stabilized, she still strictly controls herself not to eat any high-sugar and high-oil food, and hardly leaves her city to go to other places to avoid accidents. Some people complained on the Internet that it was difficult to taboo or "ground", but Ji Qingyue was able to strictly control herself after breaking through countless times before life and death.
When she was hospitalized in Shanghai, she had seen too many failed cases of kidney replacement, one patient fell after a kidney replacement and couldn't get up again, and this unknown risk made her reluctant to challenge again.
When Ji Qingyue chatted with her mother, she mentioned that everything was just right for her.
Illness at the age of 14 forced her to drop out of school, once because of her grandfather's illness, she wanted to become a very powerful neurosurgeon, but at the beginning of her life, the construction of the future was all broken. In 2015, after her condition gradually improved, Ji Qingyue wanted to study herself to register for the adult college entrance examination, but she found that her impaired memory could only allow her to cope with life and could not cope with study.
But academic qualifications have not become her regret, she excitedly shared that she had a dispute with netizens on the Internet because of some things before, "I quoted scriptures and talked highly, and the other party was still a graduate student, and he didn't quarrel with me." ”
A few months ago, Ji Qingyue wanted to study psychology and obtain a psychology teacher qualification certificate, but she had to have at least a college degree to take the certificate, and her mentality collapsed temporarily, but she was not ready to give up and wanted to try to be a companion.
Although she has been ill for many years, Ji Qingyue has not derailed from society, and in her free time, she has been enriching her life by learning art, editing, typesetting, writing, practicing calligraphy, etc.
Satsuki plays the piano
Ji Qingyue doesn't like others to praise herself for being strong, because this is a choice she has to choose in the face of fate. On Ulala's homepage, there is a similar sentence: "I can't choose the disease, but I can choose the attitude to face the disease." ”
As a publicly-funded normal student, because he could not pass the physical examination because of uremia, Ulala was unable to fulfill his contract to teach for six years. She can only face the fact that she has no job after graduation, and because of the breach of contract, she needs to return 40,000 yuan of tuition and living expenses to the school.
Life didn't crush her. On the one hand, she is looking for opportunities to communicate with the local education bureau to solve the problem of fees, and on the other hand, she is preparing to take classes in a tutoring institution after graduation, so that she can not only make money, but also match the time when she needs to go to the hospital regularly for dialysis. At the same time, she has begun to prepare to do self-media.
Now she has a new boyfriend, and although the two agreed to break up after graduation, they are still happily enjoying their relationship. When she had a makeshift tube stuck in her neck, she also put on beautiful makeup and participated in the choir competition as promised.
They are still alive and well.
Ulala has a makeshift pipe buried in her neck and waits backstage in the choir competition
Ji Qingyue's circle of friends is always full of vitality to share her recent situation, such as the recent anime she watched, the words she wrote, and the calligraphy she admired.
In July last year, she shared that she could jump and hit 8 exclamation points in a row to express her excitement. She always thought that her legs, which were the same as being crippled, would never be able to jump lightly again in her life.
However, after years of hard work, she finally managed to break away from gravity and briefly jump upwards.
*Ulala, Misaki, and Ji Qingyue are pseudonyms. Images are provided by the interviewees, except for those noted