I am Xu Hongxin (pseudonym), a patient with severe aplastic anemia who was diagnosed in 2020 while studying for a master's degree in the UK.
At first, I wanted to return to China for medical treatment, but because of my physical condition at that time, I was forced to give up going home. This year, after receiving treatment in the UK, I once again embarked on a long journey home.
As a severely ill patient, how to prepare for the 28-day intensive quarantine period to avoid "no way to seek medical treatment", how to buy a ticket that can be completed during the sharp decline in flights, how to complete the entry requirements stipulated by the Chinese Embassy in the UK... In order to live, these are all things that I need to consider and can't make a mistake.
Below is my dictation.
Dictation: Xu Hongxin (pseudonym)
Finishing: Bang Bang
That morning, I woke up from my coma, wires and catheters connecting my body to medical instruments, potions flowing through needles into veins, and ECG monitors making "tick-tick-tock" sounds. It all reminds me that I'm still alive.
The British doctor standing at the bedside greeted me and tried to inform me of my condition, but I was not familiar with the unfamiliar English professional medical vocabulary, so I had to ask him to write it down for me.
He wrote two strokes on the white paper, and I grasped the paper that had been handed to me, and a word appeared before my eyes: Leukemia. Translation Software Tips: n. leukaemia.
The doctor said, we suspect you have leukemia.
That day was June 1, 2020.
A few days later, the bone puncture report sheet showed an accurate diagnosis: aplastic anemia. I asked the doctor if he wanted chemotherapy? He said yes, usually a little hair loss.
He said it very euphemistically, and later I checked the information and found that the disease was squeezed into the 25 major diseases stipulated by the China Insurance Regulatory Commission.
I called my parents and they just comforted me and said: It's okay, it's going to be cured anyway; the girlfriend was at work when she got the call and ran out crying after hearing the news; after my best friend listened, the two of us were silent for a while and started to cry.
It's pretty crashing.
Onset of illness
I am from Kunming, Yunnan, and came to London in 2019 to study for a master's degree. Two weeks before the onset of the disease, I began to feel very tired and hard for no reason. Every day is inexplicably wrong, a little exercise, you will be dizzy, and then you will have a fever.
However, due to the fear of contracting the new crown, I did not dare to go to the GP (community clinic) to see a doctor, and I had to wait for my fever to subside. Later, I learned that fever is actually a symptom of sepsis.
On the day of the coma, I experienced an unprecedented and wonderful feeling: part of the body lost consciousness, half of the body and the other half seemed to be disconnected, and I grabbed my right hand with my left hand as if I were grasping someone else's hand.
In just two hours, my vision also narrowed. At first, I couldn't see anything as close as I got; later, I could only see the world in front of me, and the visibility was only about 60 degrees. At the same time, the language function is completely lost.
My roommates saw something was wrong with me and rushed me to the hospital. I lost consciousness on the way. It was the next morning when I woke up, and I was full of tubes.
Image source: Xu Hongxin
Curiously, I didn't feel any physical abnormality after waking up, but just asked the doctor what was happening, anxious to know how to pay, worried about the examination after the payment. Little did I know at the time that, under the UK NHS system, illness could be treated free of charge.
My vitality seems to have returned to the past, and it seems that I can continue the plan I had when I first arrived in the UK: to graduate successfully, to find a company internship, and then to stay here to work for a while; to hang out in the park at leisure, to lie on the big lawn in the sun when the weather is good...
However, this is not the case. To stay alive, I need blood transfusions and fluids every day. In order to reduce the pain and irritation caused by repeated acupuncture, the hospital implanted me with a PICC catheter. It was a slender tube that passed through the veins of the arm and reached the large veins near the heart.
So I started supportive care.
Whatever the cost
At first, I was reluctant to check what the disease was, I simply felt: as long as I can be cured, I don't want other information to affect my mentality, how this disease should be treated, that is the doctor's business, and for whether to stay in the UK or return to China for treatment, I don't want to make a choice, these topics I left to my parents.
With my head buried in the sand, I'm going to make an ostrich.
Their first reaction was to want me to return to China.
My parents didn't know English, didn't have any overseas living experience, and in an unfamiliar country, they were completely bottomless and powerless: they didn't know what the British medical system was, which hospital was the best, which doctor could save my life. But in China, where I have lived all my life, they believe and are willing to do everything they can to find the best and most controllable medical resources for me, and do their best to keep their son alive.
When they think of me being alone in England, they are afraid: who will take care of my daily life; who can give me immediate assistance when an accident occurs? What to do if you miss the golden time of rescue... At that time, because of the PICC catheter implant, I could no longer move like a normal person- my arms could neither move nor touch the water, and I did not take a bath for half a year.
There is also a real problem with my treatment alone in the UK, which is the effective visa deadline. Treating a blood disorder is a long process, and no one can predict whether I will be able to complete the treatment during my legal residency. If I can't, I could become a "black householder."
Therefore, after considering many considerations, my parents made a decision at the moment, and when my physical indications were still permitted at that time, they would let me get on a plane at any cost and return to China for treatment.
The use of the term "at all costs" to describe a flight home is not an exaggeration. By that time, the number of flights between China and the UK had dropped sharply, but prices were increasing exponentially. In a way, people who want to return home with money may not necessarily get a ticket that fits the planned time. But maybe God took care of it, and I grabbed one.
I also expressed my desire to return to China for treatment to British hospitals, and the doctors respected my decision. But he said he would give me a month of supportive treatment to ensure that I would not be infected until the day I returned home.
What makes me even happier is that I can be discharged from the hospital and come back to my roommate's house and my roommate. Most of my happy time in the UK was spent in this little house. Plus me, there were five people living in this house and we had a great relationship.
On the day I got home, I stepped out of the ambulance, stood at the door of the house, and just reached out and pushed the door open a small slit, and the sound of the screaming version of "Birds and Phoenix" came out of the room, and my whole body was suddenly excited. It was specially put on by the roommate with a stereo. He said I don't understand, this song, in addition to being used to give people, but also the meaning of the return of the emperor and the rebirth of nirvana.
I said he was really good.
Stranded in the UK
Since I have a mitral valve prolapse of the heart that regurgitates, the British doctors give me infusions every day to prevent my heart valve infection.
Every morning after I was discharged from the hospital at nine o'clock, I had to take an ambulance sent by the hospital to the ward for an infusion, and then the ambulance would take me home. Go day by day, no weekend.
Image source: Xu Hongxin
In the infusion room for severe blood diseases, there are basically nearly 100-year-old people. I am the youngest and only Chinese. Go alone in the morning, get a morning injection, and go home in the afternoon. I always snapped my fingers to figure out when I would be able to fly home.
When I repeatedly jumped in "despair" and "hope", in order to plan my return to China for treatment, my parents were still running around China, holding British diagnosis results and information everywhere to ask about the possibility of returning to China for medical treatment, trying to find a hospital that was willing to take me in.
They first contacted a domestic expert specializing in this type of disease, and then through him, they established contact with several other professional doctors, hoping to get more information. At that time, some of the doctors who talked to them did not understand the policy of medical treatment for overseas immigrants during the quarantine period, but only suggested that if they wanted to come back for treatment, they should come back quickly.
As for the choice of hospital, my parents felt that they must go to the most experienced places in the country. As a patient, I didn't think much about it at the time. In this situation, they locked up the hospitals in Tianjin and Shenzhen and began to help me contact the admission.
But the final result is that because of the new crown isolation policy, no hospital in China can directly admit me to the hospital beyond the number of days of compulsory isolation.
But in my situation at the time, without antibiotics for a few days, the condition could get worse very quickly, and then I would have a fever. I suspect that because of the fever, I will probably be placed in an area with other fever patients to wait for the test results because of the fever, but judging by the epidemic situation and my physical condition at the time, I can't afford to take this risk.
In this way, the re-disabled patients who could not stop supportive treatment met with the isolation policy that could not be mediated, and this time I was forced to give up the way back to my home country for medical treatment.
At this point, another Chinese doctor advised my parents: In that case, it would be better to let them come directly to England. In this way, when the malicious "Hyde Park Terrier" streaming media platform and the topic of "overseas people poisoning thousands of miles" were talked about by some people, my parents flew to London in reverse.
Set off again
One day, I was listening to a Symphony of Destiny in my hospital room, holding a fork as a baton. The music was just in time for the climax, the door to the ward was pushed open, and I saw the whole medical team come in, led by my attending doctor, Belem in a red-sized flower arm and flower skirt.
She told me solemnly that my neutrophil value was already 0 and I might have a bone marrow transplant. Hearing this news, the baton I was waving immediately fell.
Before the bone marrow transplant, my doctor recommended that I try ATG for 3 to 4 months. If successful, a bone marrow transplant can be performed without. But just over a month later, I noticed that the bone above my ass was sore, and the results of the examination showed that the femoral head was necrotic. I had to take a lot of painkillers, and when the effects disappeared, I took back a bottle of morphine from the hospital and drank it at home every day.
Morphine is similar to drugs, and you can't drink too much at a time, every three hours. However, of those three hours, morphine only made me feel better for two of them, and the remaining one hour had to be spent in severe pain.
Time goes forward, and there is still a month left for ATG treatment.
Normal people may have a hard time imagining days without platelets. Sometimes I wake up in the middle of the night. I suddenly found that my mouth was full of blood, very uncomfortable, and I had to get up to spit it out. However, such a thing is done many times a night, for many days. These details are not only torturing my spirit, but also my parents.
Eventually, after a long wait, ATG treatment was ineffective and a bone marrow transplant was determined.
ATG treatment for severely re-impaired patients was ineffective, so all I had left was an allogeneic hematopoietic stem cell transplant. In order for someone else's hematopoietic stem cells to be successfully transplanted on me, I had to use chemotherapy and radiation therapy to "vacate" my original immune system, so I received chemotherapy and radiation therapy.
Before starting chemotherapy, my father helped me push my shoulder-length hair off and I became a flat head. Gradually, the side effects of chemotherapy began to stand out, I began to be nauseous, sick to the stomach, every day to diarrhea; there seemed to be something in the body that wanted to run out and escape, and the tingling sensation of needle prick spread throughout my body; for about two weeks, I could not chew things directly with my mouth to eat; my head also began to faint, and then I could only lie down and sleep every day.
Image source: Xu Hongxin
The fun thing should be to lose hair, like pulling grass, gently twisting on the head, it will fall. At that time, my pillows, on the bed, were all there. My friend and I video, said: Look, pluck your hair and play.
This indisputable mentality lasted until after I decided to receive a bone marrow transplant.
I am an only child and my father is 50 years old. In order to successfully donate bone marrow to me, he began preparations weeks in advance, and the hospital sent him an injection to stimulate the growth of the number of stem cells in the blood. Due to the epidemic, the injection can only be injected on its own, and the needle is slender and reflects a silvery light under the incandescent lamp. Neither my mother nor I could get my hands on it, and he had to tie his own belly.
The day I donated bone marrow, my father and I went to the hospital. This time, it wasn't him who accompanied me, it was more like me accompanying him. My father sat on a hospital bed with a catheter in his left arm, and the blood in his body was pumped out of the catheter. A separator helps isolate stem cells from the blood and then collect them. After separation, blood is transported back to the body from the right arm.
I stayed in the hospital room and watched the machine spin all afternoon, and my father stripped him of a part of his life and passed it on to me.
Some time ago, I completed my studies one after another, only to resubmit to my tutor in September this year. At the same time, I once again opened the website where I bought the ticket, hoping to successfully return to China this time. Even though direct flights have disappeared for a long time compared to more than a year ago; there are occasional news of circuit breakers on connecting flights; and nucleic acid reporting requirements and quarantine policies for inbound personnel are becoming more stringent, I still want to give it a try.
Honestly, if a man doesn't go home, where else can he go?
Thirty thousand airfares, four thousand nucleic acids
In order to return home, having a ticket back home is a must.
I bought an Air China economy class ticket nearly half a year in advance, took off from London in April, and transferred to Copenhagen, with a total price of more than 30,000 yuan. Compared with the friends around me who are planning to return home and stare at 60,000 tickets, my ticket is a very good deal.
At the beginning of March this year, there was sudden news that some airlines would open direct flights between China and the UK. At the same time, the announcement released by the official website of the Chinese Embassy in the UK shows that according to the relevant regulations, after the resumption of direct flights between China and the UK, the consulate will no longer approve the health code of passengers transiting from a third country (place) to China after taking off from London.
That is to say, once the direct flight really starts to operate regularly, all the transfer tickets we have purchased will be in vain. After all, no one can board the plane without a health code issued by the embassy. There was no other way, even if the direct flight notice was ambiguous, I had to immediately find a ticket purchase channel.
The passage to buy a straight plane ticket is very confusing, and we first need to make a reservation. Different airlines collect information in very different ways, some register information on the official APP, and some through QR codes, mini programs, official accounts or a website. At that time, in order to book tickets, I called customer service everywhere. The phone of China Southern Airlines was connected, but the customer service said that it did not know that there was such a thing as making an appointment for a direct flight. At that time, I felt like a headless fly, as long as there was a passage, I would click in and fill it.
A few days later, I received an email: the connecting flight I had purchased had been fused. For me, who spent half a year collecting all kinds of information and carefully selecting the route back home, it was a thunderbolt on a sunny day, and the price of the ticket at that time was much higher than when I bought it before. In order to save money, I did not refund the ticket and decided to change it. After all, re-purchasing tickets means accepting new prices on the market.
Air China told me that I could change my flight to a direct flight in London and Shanghai on March 25, but I would not refund the difference of 6,000 yuan.
For those of us, in the current situation, it is good to be able to return home, and I accept it. Later, it was found that this direct flight was actually the only one, and there was no direct flight in the follow-up.
It was somewhat of a Noah's Ark, and I guessed that probably my worst encounters had been left over from the year I was sick in the year of my life.
Image source: Xu Hongxin
Faced with the situation of centralized isolation for up to 28 days after returning home, my attending doctor and I were very worried about physical problems during this period. You know, once you enter the centralized isolation stage after entering the country, unless you are diagnosed with the new crown or lucky, it is difficult to seek medical treatment.
My friend arrived in Shanghai some time earlier than me, and during the period of centralized isolation, the mouth became inflamed, the left side of the face was larger than the right side of the face, and the bite was difficult. She couldn't stand the pain and told the staff that she wanted to see the doctor, and the staff replied to her: "We can bear it, insist on persevering, we are still young."
So, she endured until now.
Oral inflammation may be tolerated, but I am not sure that a re-disabled patient like me, if the physical condition plummets sharply, is it possible to grit my teeth and endure, and I dare not make this gamble with the life I have survived so hard.
Before I left, British doctors prepared enough medicines for me to cover the quarantine period for each emergency. She took seven or eight pills and told me: if it is not comfortable, which ones need to be taken in any situation, what is the order and dosage. At that clinic, I saw it for more than an hour, and she took almost all the situations into account for me.
This stockpile of medicine preparations may apply to most overseas returnees. Around me, people with chronic diseases will have enough regular medications, while healthy friends will bring over-the-counter medications to relieve headaches, brain fever, gastrointestinal discomfort. Pull open the 28-inch suitcase and you'll find half the space stuffed with medicines, and everyone is worried that they will have no way to seek medical treatment in future isolation.
However, near the time of departure, a new rejection reaction appeared in my body: a lot of strange rashes on my skin. British hospitals actually need some time to determine the cause of the disease and prescribe the right medicine. But the ticket could not be changed, I had to go, there was no way, they could only prescribe me a lot of medicine and ointment, let me try it all.
At the same time as the preparation of medicines, there is also a nucleic acid test in order to return home smoothly.
According to the regulations at that time, I needed to perform the first nucleic acid test at the local regular testing agency 7 days before boarding, and print and download the "Self-Health Status Monitoring Form" for 7 consecutive days of health monitoring, truthfully fill in the form until the day of applying for the health code; then, within 48 hours before the departure of the flight from the UK, I would go to the testing institution designated by the embassy or consulate for nucleic acid and antibody testing.
These two tests had to be carried out at different institutions, and I spent a total of about 2500 yuan.
The first test is at the NHS and it is free. The second test was in an institution called "Wang Pharmacist Pharmacy", whose official website showed that the embassy in the UK had designated it. The nucleic acid testing facility is located in a row of dilapidated bungalows on the street, and the staff it comes into contact with is all Chinese. The tail end of the house is separated into several small compartments, and nucleic acid and antibody tests, including the N protein that some non-inactivated vaccine vaccinators need to be tested, are performed in compartments.
The next day, after getting the negative test result, I successfully changed the green code. On the afternoon of March 25, London time, the flight I was on finally took off. However, after 3 days, the last nucleic acid test time limit for follow-up personnel from the UK to China was shortened from 48 hours to 12 hours. After that, the price of nucleic acid testing on the official website of "Wang Pharmacist Pharmacy" has exceeded 4,000 yuan.
From the diagnosis of the obstacle to the failure to return to China for the first time, from the treatment in the UK to finally being able to go home, I thought that when the plane rushed into the sky, my mood might be a little complicated, nervous and excited, but in fact there was none. Perhaps it was the pre-preparation that consumed my emotions: I needed to drag my body, which was recovering and rejecting, to prepare for a long time in advance, to go through countless formalities, to worry about every process — every step was unknown.
A British doctor I know well once told me that last April he visited a Chinese patient with leukemia who was younger than me: a lower platelet, intracranial hemorrhage, brain death on a ventilator. The hospital contacted the patient's parents, and the family was coming from the country. It's not the same as my ending. She has not been able to return to China, and may never be able to return to China.
I thought I was the first Chinese student in the UK to encounter this situation, but then I found out that there were so many bumpy stories around me. Some people have returned, and some people have been forced to stay abroad because they cannot withstand long distances and survive the quarantine period because of their physical condition.
When checking in at London Heathrow Airport, somehow the luggage was suddenly checked very strictly. I was forced to open the box and throw a lot of stuff. It was hard to get on the plane, and the whole person had been consumed to numbness by the lengthy process.
On the contrary, after landing in China, I slowly found that the signs and notices around me had all become Chinese, and suddenly there was a feeling of "I finally returned to China".
Go home
By the time we arrived at Pudong Airport, the epidemic in Shanghai was already serious, and the airport was actually closed. There seems to be only one other flight on the tarmac besides ours. From the time I stepped off the plane until I finally left the airport and was transferred to the quarantine hotel, the whole process was invisible to other passengers outside the same flight.
When I was isolated in Shanghai, my heart was always hanging: for a while there was a distress letter from a hemodialysis patient on the Internet, a moment I saw an old man die at home, and I had to get on an ambulance and ended up in several hospitals but failed to be admitted... The information appeared and disappeared, and it was hard to tell if it was true or not, but I was always worried that I would not be next.
Due to the lockdown, Shanghai's supplies are gradually in short supply, and the food at the quarantine point has also been affected. Especially in the later stage, the dishes sent are very unfree, and the delivery time is getting late. But fortunately, I am not picky about food, not to mention that there are so many residents outside who may not be able to eat at all.
With the shanghai quarantine deadline approaching, I needed to arrange a follow-up trip back to Kunming, but the epidemic made many transportation to leave Shanghai stop, and in desperation, I finally bought a high-speed rail transit from Nanjing.
The departure from the Quarantine Hotel in Shanghai was at 5 p.m., and my latest nucleic acid test results were 15 hours before the official "48-hour expiration" test. This meant that I had to leave the city by 8am the next morning, or I would probably have to "wander" Shanghai on foot with three suitcases in my suitcase.
At 3 o'clock in the middle of the night, I arrived at the Nanjing isolation point, a very dilapidated house, I reached out and touched the bed, and Caught a spider.
It's only one step away from success, I only need to stay here for two nights and I can go back to Kunming. The quarantine conditions there should not be too bad, after all, the quarantine point in my hometown may not be so tight. I didn't expect it, and I wasn't really nervous, because it was all specially built - I directly lived in the prefabricated board room.
The temperature difference between day and night in this place in Kunming is very large, and in this prefabricated board room, it is too hot at noon and too cold at night. It may be that the new building is not long ago, as soon as the door is pushed open, there is a strong smell of formaldehyde, but the staff is not allowed to open the window.
Image source: Xu Hongxin
The entire quarantine area may be equipped with surveillance, and as soon as someone pushes the window open, the broadcast will announce: xxxx room, do not stick your head out, close the window. The door can not be opened without authorization, if you open the door at will and slip out, it will extend the isolation time.
The room I stayed in probably hadn't been there before, and the protective film on the sink drain was still attached and not torn. On the side of the room near the aisle is a material delivery window and a garbage throwing window. Each window has a small door inside and outside the room, and the people inside and outside cannot be opened at the same time.
Due to the huge temperature difference between day and night, I almost froze the cold on the first night, and my mood was somewhat broken. Worried about infection after a cold, worried about formaldehyde smell, considering the physical condition, I hope to be able to help me change the environment isolation. I called the city, the district, and the 12345 hotline, and they were very good and said they would try their best to help me feedback. When I was still four or five days away from the quarantine, I finally received a call to visit me and said that I would help me implement it. But in fact, my quarantine period is almost over.
While waiting for feedback, I asked my family to send me some thick clothes to warm up the baby. During the isolation period, each quarantined person can accept daily necessities sent by his family once, and nothing he eats can be sent, and the staff must check it; the courier cannot be received. Luckily, I had enough medication with me before I left the UK, and now I'm basically getting better.
The day after I arrived at the Kunming quarantine point, my seven aunts and eight aunts, as well as my cousins and cousins, all went to my house. They set up a lot of things at home, like a welcome ceremony, and opened up my WeChat video to show me everything that was lively there. The family said: It is good to cure the disease, and it is good to come back safely. I really can't wait for me to really get home, but since I have entered Kunming, I should have stepped into the door to go home - first hold an online party, wait for me to finish the quarantine, and then have another offline.
I stood my phone at the intersection of the wall of the room and the table, and the corner was just enough to support the phone. My head was slightly lowered, and I saw that the camera on the other side of the video switched to front and rear for a moment. The faces of the family, balloons, color strips, welcome posters, and the sound of giggles passing from the palm-sized screen to the small space in the board room, I suddenly couldn't hold back. Standing up, he moved to a position invisible to the camera and began to gagged his mouth with his fist and cried.
They ask over there; what about people, what about people? Seeing that I did not respond, I guessed to myself that I might have been called to test nucleic acid.
Only I knew, the way home, that I had walked too far. (Planner: Leu.)
Acknowledgements: This article has been professionally reviewed by Cong Jia, deputy chief physician of the Department of Hematology, Beijing Tongren Hospital affiliated to Capital Medical University
【Note】
Cong Jia, Deputy Chief Physician of the Department of Hematology, Beijing Tongren Hospital Affiliated to Capital Medical University Review Opinion:
Hematopoietic stem cells are like the seeds of various blood cells, with the potential to differentiate and mature, and play a role by proliferating and differentiating into mature blood cells (crops).
Therefore, allogeneic hematopoietic stem cell transplantation is the process of transplanting the "seeds" of other people's hematopoietic cells into the patient's body to rebuild the blood system and immune system. Through this technology, not only was the patient's severe re-disorder (its own "seed" dried up for some reason - mostly due to immune-mediated damage), but also cured many malignant blood diseases such as acute leukemia (more often, the "crop" deteriorated into "grass").
Therefore, pretreatment is required before an allogeneic hematopoietic stem cell transplant is performed. The purpose of pretreatment is twofold:
1. Provide adequate immunosuppression to prevent graft rejection
2. Eliminate the underlying diseases that require transplantation
These goals have traditionally been achieved by administering multiple chemotherapeutic drugs with the largest tolerated dose, without overlapping toxicity, with or without radiation therapy.
Sibling total hematopoietic stem cell transplantation is the most common means of transplantation, but there are more domestic only children, the patients in this article use semi-conjunctive transplantation between parents or children's relatives, which is also another common form of transplantation, which greatly alleviates the problem of insufficient donors, and mainland domestic scholars, especially Peking University People's Hospital, have made outstanding contributions in this regard.