Recently, I saw an unbelievable TV series: a husband stuns his wife every night, inserts a finger-thick syringe into his wife's back, and can secretly extract bone marrow and sell it for money.
I sent this video to Dr. Sun, and he said that the director either had a misunderstanding about bone marrow matching or the difficulty of the extraction operation.
The only thing that is not mistaken is that her husband's longing eyes for bone marrow have been seen in the eyes of many leukemia patients.
In his hospital, many families were torn apart because of bone marrow donation. Because even the closest relatives refuse to donate, and those patients are begging in the end.
Dr. Sun told me that over the years, he had only seen one exception.
There was a girl who contracted leukemia at the age of 21, and the first step in saving her life was not to plead, but to cut ties with her family.
On this day, I was working on things in the office, and a girl's crisp and pleasant voice came: "Doctor Sun, little mud reports to you." ”
I was shocked to hear this familiar name.
The girl blinked with big eyes and kept smiling when she saw me, and her mental state seemed to be good, but her face was still slightly pale because of the disease.
Before Little Mud came to me, we were netizens. She is the most active patient in the leukemia forum, and I try to help her answer questions about her condition everywhere. Just recently, she suddenly told me that if she wanted to live, she would have to leave home and come to me for a transplant.
I didn't agree right away, because I'm not a doctor.
Little mud also said that I was the only doctor on the Internet who answered her questions seriously, and that she had asked other patients and had great trust in our hospital and in me.
There's a reason for her trust, our hospital is indeed one of the most reputable hematology hospitals in the industry. However, the level is high, the cost of treatment is also high, and the cost is a problem that she has to face.
Now the little mud is in front of me. She was small and thin, wearing a hat embroidered with small flowers, and carrying a large suitcase that was extremely disproportionate to her size. "Dr. Sun, I think only you can save me. ”
Before I could be moved by this sentence, I realized that something was wrong—there was no one behind her. The people who come to our hospital to see patients are all patients with malignant diseases, hospitalization, formalities, treatment and accompaniment, how can there be no family around them?
And if you want to do a transplant surgery in the future, you will need at least 300,000 yuan for surgery. Otherwise, what awaits her is endless chemotherapy and watching her body decay everywhere. Unexpectedly, this little girl told me that the hat and suitcase on her head were all belongings.
She only had 20,000 yuan left on her.
I don't know how this 21-year-old girl had the courage to come to the hospital in Beijing alone, or where she would fall in the face of illness and money.
Little Mud has long missed the best time for treatment.
She underwent chemotherapy in her hometown for a period of time, but the treatment in the local hospital was not standardized, and there were often no beds, and treatment was delayed.
Another reason why her condition has not improved is that her family's funds can't keep up, and every time she talks about it on the Internet before, Xiao Ni is reluctant to say more.
At that time, I couldn't ask anything, so I could only suggest that she go to a big hospital to consider a bone marrow transplant, otherwise her condition might deteriorate at any time. But Xiao Mud was not transferred to the hospital for a long time, and even chemotherapy was stopped. I still wondered, why did someone who was so active in understanding the condition suddenly give up on treatment?
Under my questioning, the little mud told the truth.
Xiao Niba's family is in the countryside, and the local area has always been patriarchal, and she has a younger brother under her, so she has not been paid much attention since she was a child.
When she first fell ill, she had just graduated from junior college, and she had not had time to work to earn money, and her younger brother was in high school.
They heard that leukemia was a terminal disease, and it would cost a lot of money later. Thinking that his son would also need money to go to college in the future, he decided not to treat his daughter. When outsiders asked, they said that this disease may not be cured by spending money, and that being a parent has already done its duty.
Xiao Mud was also depressed for a while: "The family really can't take out so much money, and when I die, it will be relief, I am relieved, and the family is also liberated." ”
I strongly advised Xiao Niba, bone marrow transplantation has a 50% cure rate, and you can still go to a big hospital in Beijing to fight for it, but you have to make up enough money.
However, the family did not agree with Xiao Ni to go north to see a doctor: "They said that I was just losing money, and I didn't earn a penny for my family and spent more than 100,000 yuan, and now my family is in debt, and I don't have extra money to give." They said that if I came out, I would be left to fend for myself, and that I would be left alone. ”
Only then did I understand the meaning of the little mud screen name, she felt like a piece of mud, useless, even if she threw it on the side of the road, no one wanted it.
I was worried that after being abandoned by my family, Little Mud would give up on myself.
Thankfully, she finally came to our hospital for treatment.
When Little Muddy came, I thought she had made sense of the family. I asked her: Why did you come alone?
"Now the family is busy with farming, and they are not free, so I will come first and they will come later. The little mud voice became quieter and quieter, and his head lowered.
As soon as I heard that this reason was untenable, I asked her to tell the truth.
Xiao Niba said that when she left home, her parents gave her 20,000 yuan, saying that this was the last time she would pay.
The transplant needs to stay in the warehouse for a month, and the daily cost in the warehouse is close to 10,000 yuan. Only gave 20,000 yuan, which was really intended to leave her to fend for herself.
"I don't just run out of the country without caring about anything, I've already figured out that if it goes well, the money for the transplant can be scraped together. By visiting forums and asking patients, Little Muddy has found a way to solve the problem - online fundraising.
I also help her as much as I can. Although I only brought 20,000 yuan, I still arranged for Xiao Niba to be hospitalized, and there are some policies in the hospital that can be treated first and then charged, and I also helped her apply.
It took almost two months from hospitalization to transplantation, and Xiao Niba had to scrape together 300,000 yuan before that.
A bone marrow transplant is not a one-day or two-day operation, and the patient needs to stay in the transplant booth for a month, which is the biggest expense. After leaving the warehouse, you have to be hospitalized, so the transplant fee, medical expenses, and nursing expenses add up, and it will take at least 300,000 yuan.
If you don't make up enough, the little mud can't get out of the warehouse.
But 300,000 is not a small amount after all, and many fundraising platforms will also set fundraising limits.
Every time I make rounds, I can see her hanging up for treatment and surfing the Internet at the same time, looking for all kinds of possibilities for herself to survive.
Fundraising online, often to reveal one's own scars to others, is often more sympathetic.
However, Xiao Ni didn't want to gain the pity of others by selling miserable, she felt that people with leukemia were miserable, and she was nothing special in comparison. So when fundraising, she didn't mention anything about her parents' abandonment and survival alone, only writing about her illness and the cost of treatment.
Little Mud is alone, and the fundraising is what I proved to her. I got a certificate from the hospital, and I also made a reference for her on the platform.
In the first few days of the fundraising link, the amount will go up, but in the later stage, the amount will beat more and more slowly, and it will become less and less.
When there was still some distance from 300,000, Xiao Ni had no choice but to ask the Foundation for help. Little mud also asked me that if the foundation came to the hospital to issue a certificate and verify the authenticity, I would help her tell the truth.
She met a volunteer, Xiao Jia, online, and helped her connect with the foundation. The girl is still in college and will come to the hospital to volunteer during the summer vacation. In our hospital, we often see two kinds of volunteers, one is the staff of the fundraising platform and the charitable foundation, who help patients solve the problem of life-saving money so that these patients can have the opportunity to receive treatment.
There is also a kind of like Xiaojia, out of love, who voluntarily came to the hospital to help. They will help some patients in ethnic minority areas who do not speak the language to do translation, and they will also help some patients who come out of rural areas and cannot find a way to run errands and go through procedures. It may seem like a trivial matter, but it is a great help for these patients.
I don't know why, those volunteers who have heard the story of Little Clay will want to help her. Among them is this Xiaojia.
Fundraising requires all kinds of procedures, certification, and stamping, which were originally the jobs that Xiao Mu's parents should do, but now they are all Xiao Jia running before and after.
But there are some things that volunteers can't help with anyway, such as the need for family members to provide suitable bone marrow.
Only transplantation of suitable bone marrow can cure leukemia. But over the years, I have seen too many things where family members are unwilling to match bone marrow, and in the end, patients and families can only break up. And the little mud, before he got to this point, he had already broken with his parents.
Since Xiao Mu was hospitalized, we took her match to the Chinese bone marrow bank's program. Just when it came to matching donors, there was another difficulty.
We do bone marrow transplants, and the best donors are siblings, that is, brothers and sisters, and Xiao Niba has a younger brother, but after he got sick, he has never been matched with his sister. I don't know why, and I didn't ask too much.
The second choice is the non-blood donor of the Chinese bone marrow bank, and the final choice is the semi-compatibility of parents and children.
When matching, there was no donor in the Chinese bone marrow bank who was completely compatible with the ten points of the small mud, and only one with 8 points was found. This is not the best donor, and the risk of rejection after transplantation is higher, but it is always slightly better than the haploidentical of the parents.
She had no choice but to rely on non-blood donors.
The Chinese bone marrow bank needs to go through a lot of processes, and it takes about two months to carry out the compound matching and physical examination of the donor.
I was worried that Xiao Ni would not be able to wait for that time, so I specially submitted an application for expedited procedures, and the China Bone Marrow Bank also attached great importance to it, but for the safety of both parties, the process that should be taken could not be saved, and finally helped us advance by a month.
During the month of waiting for the collection, I was once again faced with a dilemma.
Little Mud has been undergoing chemotherapy many times in the hospital in his hometown, but it has not worked. She is not in a position to have a transplant directly. I can only try chemotherapy again to try chemotherapy to reduce the tumor burden as much as possible, and if the remission effect is good, it can improve her long-term survival rate after transplantation.
At the end of the first course of treatment, the bone marrow aspirate showed that the effect was not good, and the tumor burden in the small mud body was not alleviated, and even had a tendency to worsen. In general, we would not choose to give chemotherapy to the patient again.
During this period, if Xiao Ni continues chemotherapy, her body function and immunity will be further damaged, but if she does not do it, the leukemia cells will multiply, which is directly life-threatening.
In order to make it to the transplant, I decided to let her continue her chemotherapy.
But after chemotherapy, her long-term survival rate is less than 30%.
Upon hearing this, Little Mud's eyes immediately turned red, and it was the first time I had seen her appear vulnerable.
finally scraped together enough life-saving money step by step, and also matched a donor, but there was only a 30% chance of surviving. Parents had long anticipated this result and gave up on themselves, so wouldn't the efforts they had made during this period of time be in vain? Is it worth it to leave home alone and fight for this hand?
I once had a patient who lost her will to survive after learning that her father had died, and she could live for a year or two even if she couldn't be cured, but she only lived for a little more than a month before she died. And her illness itself is far from that serious.
I remembered the time when Xiao Ni and I chatted online, when it came to her family, although it was not face-to-face, but I felt that Xiao Ni's low mood was mixed with a lot of unwillingness, she didn't want to be given up like this, after all, there was still a chance.
But now the chances are getting slimmer, and I'm a little worried that Little Mud's will will be shattered as a result.
After being depressed for two days, Xiao Mud actually cheered up again: "Don't say that there is still a chance of thirty percent, even if it is only one percent, I will transplant it." If you don't fight, the opportunity is zero, and if you fight, it must be greater than zero. ”
I had to sigh at this girl's tenacious desire to survive, she desperately fought for her chance, and I understood why so many people were willing to help her.
Soon after Little Muddy came to the hospital, I always felt that she had more people than I knew. As long as she walked on the road, she greeted everyone along the way, as if she knew everyone.
Most importantly, she always finds someone to help her when she is struggling. After Xiao Mud was hospitalized and started chemotherapy, a different face appeared at her bedside every day. Those people came on time in the morning, noon and evening to bring food to Little Mud, and some brought her a change of clothes.
And the most she says every day is "thank you", sometimes to the person who delivers the meal, sometimes to the mobile phone.
Only then did I understand how dare Little Muddy come to see the doctor alone, and she found an organization that she could rely on - the Patient Friends Association.
In our specialized hospital, there is a large number of leukemia patients. After their transplant, they usually stay with their families near the hospital for more than half a year.
Everyone sympathized with each other, and at first they would set up a WeChat group to exchange their illness. Later, as more patients and family members joined in, WeChat groups were subdivided, such as hometown associations by region, ward meetings by attending physicians, escort meetings by patients' families, and even disease associations subdivided by complications.
On weekdays, whoever is short of medicine, who has an urgent matter to go back to their hometown for a few days, who can go to the hospital to help run an errand and deliver a meal, who makes hometown dishes, and yells in the group, the patients will respond.
Xiao Niba joined various patient associations long before coming to Beijing, she is very active in the group, actively participates in any topic, and as long as she is not in chemotherapy after coming to the hospital, she is also very enthusiastic about helping. When they learned that she had no one to take care of her when she came to Beijing, the group members were willing to help this little girl.
As soon as she came, someone arranged for her to be introduced to a place to live, and after the treatment began, the 20,000 yuan of Xiao Ni couldn't stand the flowers at all, and she did bone puncture and chemotherapy, thousands of yuan at a time, plus expenses such as eating, and lived a tight life every day.
Because of the high risk of infection, leukemia patients have extremely strict hygiene requirements, and the patients' things are cleaner than those sold outside. Everyone also thought about saving some money for her.
During chemotherapy, you need to lie in the hospital from morning to night, and the responsibility of three meals a day falls on the patient meeting. Leukemia patients have extremely high dietary requirements, cannot eat big pot rice and takeaway, and every meal needs to be bought and cooked by family members.
A course of treatment lasts seven or eight days, and the diet of the little mud is borne by the family members of each patient group in turn.
She was actually afraid of bothering others, but she couldn't cope with it, so she couldn't help it, and offered to give some financial compensation, but the patients didn't accept it, and Xiao Mud teased that she was eating 100 meals every day.
But the patients don't feel that this is a burden, they are all easy to help, even when they need money to save their lives, they can borrow from each other.
Leukemia treatment often hundreds of thousands or even millions, many people can't borrow money from their relatives and friends, but there are always patients who will lend a hand, and those who are conditional or even do not ask for repayment, and those who are not rich will also show their hearts, after all, many families are experiencing the same suffering.
I have never heard of a patient who borrows money and does not pay it back, in this group, everyone has to have a high credit because everyone knows that this is life-saving money, and there is no way not to borrow, and it must be repaid.
I deal with leukemia patients every day, and I can see the other side of this group's sensitivity and inferiority. Because of low autoimmunity, we ask patients to stay away from crowds as much as possible when they go out to avoid infection.
But the outside world is also deliberately isolating them.
Now wearing a mask on the street is the norm, but a few years ago, only leukemia patients would wear masks and hats to hide their bald heads.
Searching for "leukemia" on the Internet, the top question remains: Can eating with a leukemia patient be infected?
Therefore, leukemia patients are more in a group to keep warm, make dumplings and dumplings together during various festivals, and Xiao Mudi will often participate in these when she is free, and she will also take the initiative to organize some activities. These patients gradually formed their own small world, where they crossed themselves and others.
Right now, the little mud is the one who was lucky to be crossed.
One, ten, hundred, thousand, thousand, ten thousand, one hundred thousand, the little mud looked at the six digits on the account and breathed a long sigh of relief. With the help of volunteers and fellow patients, she was able to scrape together enough money to save her life.
But then came the bad news, Little Mud's chemotherapy has not been in remission.
As a last resort, we decided to forcibly transplant it.
Just a few days after the start of transplant pretreatment, Xiao Mud soon had an adverse drug reaction, vomiting everything he ate, and couldn't eat anything.
I used a strong antiemetic stomach medicine that didn't work well, so I had to wait for her to get through it on her own.
I knew that Little Mud was uncomfortable, but I still encouraged her to eat even if she was nauseous, she had little hope for this transplant, and there were many complications that could occur later, and if the nutrition could not keep up, the next hurdle would not be able to pass.
Seeing that Little Mud's body was weakening day by day, I couldn't help but talk to her once, wanting to try to see if there was a possibility for her family to come. Money is only one aspect of the treatment of leukemia patients, people instinctively panic in the face of the disease, and emotional support is also essential for these patients.
After transplanting into the warehouse, the requirements for three meals a day are higher, although there are patients who can help, but it is always bad to trouble others for a long time. Moreover, the transplant can not be completed in a day or two, and other patients even need two family members to take care of it, and how can Xiao Mud face this life-and-death operation alone.
What's more, some documents still need to be signed by family members before surgery, which cannot be replaced by any volunteer.
I told Little Muddy about this, but there was one thing I didn't say. She was at high risk of a transplant and could have died during the surgery. If that's the case, then there will be no one to handle the aftermath at that time, so should the patient's family also have to do it on their behalf?
As doctors, we are also worried that family members will come to find trouble, no one will come when we see a doctor, and when there are no people looking for a hospital to explain, we can come with a large family, which is also a common thing in our hospital.
I insisted on letting the little mud's parents come to visit: "Can you persuade your parents again, after all, you are flesh and blood, and you really can't save you when you die?"
Little mud looked embarrassed: "This time I came out to see a doctor, my family was against it, and I said that they would no longer care about me when they came out, and I also said that I would not ask them again." It can be seen that Xiao Mud is also stubborn, her parents gave up on her, she held back her strength and tried to save herself, and contacted doctors, volunteers, and patient associations on the Internet.
Even before the transplantation step, the list of items in the transplant warehouse was prepared. A few pieces of clothes, a few pieces of underwear, the number of toilet papers, the size of the face and foot basin, a list of dozens of items is very detailed, she thought she could cope with everything, and she was ready for everything.
It's hard to get her head down at this time.
I then persuaded her that she and her parents were afraid of anything, and there was no shame, and her parents were mainly because of money, but now that this problem has been solved, I think they will agree.
Little Mud fell silent, she hadn't contacted her parents once since she came out of the house, but she was embarrassed to rely on patients and volunteers for everything.
Little Mud's parents finally appeared. They look like honest rural old men and old ladies, dressed plainly, and although they are in their early fifties, their faces make people feel that they have experienced a long time of baptism.
They spent more than 100,000 yuan to see a doctor for Xiao Ni in the early stage, and they have already emptied their family funds, and they don't know that there is such a way as online fundraising. Sometimes I can't guess if they're ruthless or incompetent.
The little muddy father returned to his hometown two days later, and his mother stayed to take care of her.
Xiao Mud finally made it to the transplant, but because of her low immunity, she had a high fever during the transplant process, and we used strong antibiotics to force her to hold on until the transplant was returned, so she was finally in danger.
This girl who is bent on saving herself has finally succeeded.
But we don't dare to be too optimistic, after all, transplantation is only the first step, and there are still many hurdles to be overcome.
Homing, rejection, infection, immune reconstitution, and relapse prevention are all important because each level can cost lives.
I am also walking on thin ice when dealing with complications, after all, 300,000 yuan has been spent in the transplant warehouse, and too many follow-up complications mean that there will be more money, and it is too cruel for Xiao Mud to raise money again at this time.
During the month of the transplant barn, she was mentally exhausted many times, and all kinds of discomfort made her not even have the energy to chat on her mobile phone.
Fortunately, Xiao Mud is also angry, and the complications in the back are all controllable, but her body still suffers a lot of sins.
During this period, Xiao Ni caused hemorrhagic cystitis and intestinal rejection, the former will have frequent urination, urgency, blood and pain, and the latter will have diarrhea, these two complications occur at the same time, causing Xiao Ni to sit on the toilet for a day, longer than lying in bed.
Little Mud's mother was only responsible for cooking and delivering meals during this period, and she couldn't do many things, and the help she could help was also limited.
This puts more demands on the care of family members, such as timely cleaning, and helping patients get in and out of bed, and day and night, causing pain to patients and family members.
Every time I made a round, I could see that she was uncomfortable, but she was still trying to squeeze her smile, and she couldn't bear it anymore before she said it.
At this time, the little mud mother is not very good, when the daughter said that the urine is painful, she said that the pain is endured, and she does not accompany the bed at night, worried that she will not sleep well, and she will not have the energy to cook and deliver food the next day.
Little mud thinks it's good that her mother can come and take care of her, many patients can't eat in the transplant barn, and they vomit when they eat, I told them to take the food as medicine, and they have to continue to eat if they vomit.
Mom's cooking is a little muddy and you can eat a little bit. She didn't expect her mother to take care of her day and night, after all, the old lady was not in good health, and if she was tired, she wouldn't even have a food delivery.
I asked the nurses to pay more attention to the little mud when they were on duty at night and help more.
After the first bone marrow review after transplantation, no leukemia cells were found in Xiao Mu's body, although some complications are not completely cured, as long as the tumor does not recur, other complications can always be slowly grinded.
Many leukemia patients have a timer app on their mobile phones, and they count the day of the transplant infusion as day 0, which is the first day of their new life and their second birthday.
In the same way, the donor is the one who gives them new life.
After the transplant was successful, Little Muddy was eager to meet his donor and express his life-saving grace.
However, according to the regulations, patients and donors are not allowed to meet and contact for two years after transplantation, in order to prevent potential money transactions and to protect the personal privacy of donors. However, the little mud can write a letter to the other party and give a small gift of no more than two hundred dollars.
Xiao Niba wrote three full pages, and made a wind chime with his own hands for the Chinese bone marrow bank to hand over to the donor.
After the review, Little Muddy wrote a second letter, telling the donor that she had given her a new lease of life.
After a month and a half of transplantation, Little Mud was discharged from the hospital because she had no money. The intestinal rejection of the small mud is not completely healed now, and it is generally best to continue to be hospitalized in this case, otherwise the recurrence of the condition will be more troublesome.
But Xiao Mud used the original 20,000 yuan, and he has done his best to get to this point.
I heard that Little Mud still went home and returned to her parents, after all, she still needs someone to take care of her body after the transplant.
When I was discharged from the hospital, I was worried that this strong girl would hold on to herself, so I repeatedly told her that if she had diarrhea or was unwell, she should contact me as soon as possible and come to the hospital as soon as possible, and my mobile phone would be turned on 24 hours a day.
Unexpectedly, the first time Xiao Ni saw the outpatient clinic after being discharged from the hospital, he came alone.
She was still thin and small, wearing a thick coat, her gait was a little staggering, she was still wearing the hat with a small flower, and the mask covered most of her face, but her eyes were still shining.
Little mud said that her mother went back and took care of her for almost three months, and the family couldn't leave her. "After being discharged from the hospital, I can take care of myself and she can take care of me when I need it most, I am already very satisfied, I don't blame her. ”
I sighed silently in my heart, my own daughter, how can I be so ruthless.
I had to tell her again to take care of herself, to come to me or her fellow patients if she had something, and not to be afraid of trouble.
Little Muddy assured me with a smile: "I have survived until now, it is thanks to these patients, volunteers and Dr. Sun, since I have survived, I must live well, and not let everyone's efforts go to waste, my life is not only my own, but also everyone's." ”
She is still active in various patient groups, helping new patients, connecting them with hospitals, introducing her experience in seeing patients and fundraising, enlightening patients, and cheering them on. Many patients need someone like her who has already passed the test to teach by example, which will be more credible and even more useful than the doctor's lecture.
She said that she was able to survive, and the patient group played a big role, so she also had to help other patients and help more people survive.
I can't help but think of the time when this girl dragged her luggage and tried everything to keep herself alive when her family gave up on her. Thinking of this, I really want to comfort her, even if we are a small piece of mud on the side of the road, we will be loved and deserve to be treated kindly.
But come to think of it, she knows this sentence better than anyone else. She knows that the only one who can save herself is herself, she knows that she has no time to waste begging or complaining, she does not lack love and can even give love.
She is the toughest piece of mud.
Just like in the movie "I Am Not the God of Medicine": there is only one disease in this world, and that is the disease of poverty.
In my past impression, if you have leukemia, if you don't have the money to treat it, it is tantamount to going to a dead end.
It wasn't until Sun Gui Nest told me the story of the little mud.
He said that money is not the biggest obstacle to the survival of leukemia patients, and the proportion of medical insurance reimbursement has increased in recent years, as well as various fundraising platforms and foundations, and if you want to raise money, you can find a way. No one can take care of them, but they can also help each other with their patients.
This is one of the reasons why Dr. Sun wrote this story, he is most afraid that more people will choose to give up before they reach the end of the road.
He also wrote down some suggestions for mutual aid in severe illness here, which ordinary people may not necessarily use, but for those who really need it, it is a life-saving "medicine":
1. Many seriously ill illnesses may have a dedicated foundation that can prioritize them for help.
2. Truthfully state your situation on various fundraising platforms to increase credibility and get more help, and if necessary, you can ask a doctor to help testify.
3. Many hospital patient associations may not be directly searchable on the Internet. The most reliable way is for patients to ask their fellow patients before hospitalization, and integrate as soon as possible to start mutual assistance.