Sweetie, 5, is ignorant, but she knows that her mother has to carry the pink leather bag wherever she goes, because it contains the battery of her mother's "heart".
2017 was a mix of joys and sorrows for 29-year-old Liao Cui. This year she gave birth to a lovely sweet, and a few months later she was diagnosed with dilated cardiomyopathy, which can cause heart failure, arrhythmias and sudden death.
Liao Cui did not escape heart failure, and the condition later progressed to the refractory end-stage stage. According to the 2019 research results of Gao Runlin and Professor Wang Zengwu of Fuwai Hospital, about 13.7 million people aged 35 and over in mainland China suffer from heart failure.
For patients with end-stage heart failure, there are generally three ways: heart transplantation, palliative care, and implantation of ventricular assist devices. Liao Cui chose the last one.
On August 30, 2019, she underwent an artificial heart implant at Wuhan Union Medical College Hospital. After the operation, her left ventricular apex had an additional blood pump weighing about 180 grams and 50 mm in diameter, and the impeller helped her left ventricle transport blood into the aorta at a speed of more than 2,000 revolutions per minute.
The battery and the in vitro controller were put into a pink leather bag by her and carried at all times.
In occasional healing interviews, Liao has been with her artificial heart for more than 900 days.
In her opinion, there was nothing more important than living well. Just like on the morning of the operation, in the face of the unknown, she wrote in the circle of friends: "I prepared for the worst, but I still have the greatest expectations, praying that the operation will go smoothly and I will be discharged safely... Goodbye, goodbye!"
Liao Cui with a pink leather bag cross-body
Image source: Provided by Liao Cui
Artificial hearts are the ultimate choice
On February 23, 2017, the day before Tiantian was born, Liao Cui, accompanied by her family, went to the hospital for fetal heart rate monitoring, and she told the doctor that she was tired and hoped to have an early caesarean section.
The doctor gave her a heart ultrasound, and when he saw the results, he asked her to quickly transfer to the top three hospitals.
In a third-class hospital in Wuhan, after reading Liao Cui's electrocardiogram, the doctor pushed the wheelchair and said that the situation is very serious, it is possible that one body and two lives, you do not go one step.
In fact, during pregnancy, Liao Cui had feelings, and her electrocardiogram showed abnormalities many times during the previous obstetric examination; when she took a bath, she just touched her stomach and saw her chest rise and fall rapidly; in the 37th week of pregnancy, the doctor recommended that she climb the stairs to exercise, but she could not even climb up one floor.
For these situations, the explanation she got from the doctor was that it was a manifestation of the increased burden on the heart after pregnancy, and there was no need to worry, so she did not pay attention to it.
After the birth of her daughter, Liao Cui was sent to the cardiology department. She remembers that at that time, the doctor judged that her condition was perinatal cardiomyopathy, and the heart would recover within half a year. A month later, another top three hospital gave the same diagnosis.
But Liao Cui's health did not improve with the end of the perinatal period. She was so weak that it was difficult to get up and take a shower, and the vomiting did not stop. These are all symptoms of heart failure.
Li Qianzhen, deputy chief physician of the Department of Cardiac Surgery of Union Hospital Affiliated to Fujian Medical University, told occasional cures that heart failure is more serious or after the end stage, due to the reduction of cardiac ejaculation, other organs will be affected, there will be venous congestion, tissue ischemia, such as gastrointestinal congestion will cause vomiting. There are also patients with end-stage heart failure who have difficulty breathing and swelling of both lower extremities.
Liao Cui did not have breathing problems, but suffered from daily vomiting. In early June 2017, she was diagnosed with dilated cardiomyopathy and end-stage heart failure by Wuhan Union Hospital, and needed to prepare for heart transplantation.
The China Heart Failure Diagnosis and Treatment Guidelines 2018 show that heart transplantation is an effective treatment for end-stage heart failure. Between 2015 and 2019, 2262 heart transplants were performed and reported in China, and the survival rate of patients in the first year after surgery was 85.2%.
Not every patient will be able to receive the transplant as desired. Li Qianzhen introduced that many patients in the early days could not wait for a suitable heart donor, and the premise of transplantation was that someone donated, and it needed to be successfully matched, and some patients had not waited until people were gone. His department treats about eighty patients with end-stage heart failure a year, and less than half of them end up receiving transplants.
For the heart transplant, Liao Cui was a little afraid, she knew that the operation was very expensive, and she was worried that she would not survive the first year after the operation. In the following two years, she traveled to many hospitals in China for treatment, until she woke up after a few days of rescue, and Liao Cui decided to accept the transplant.
In 2019, Liao Cui was hospitalized in a hospital in Beijing, and the pillow was "Life Without Limits" sent by a girl in the same ward, and the author Nick Hu Zhe was born without limbs. (Source: Courtesy of Liao Cui)
On June 17, 2019, Liao Cui was admitted to Wuhan Union Medical College Hospital, and 9 days later joined the COTRS system (Chinese organ allocation and sharing computer system) transplant appointment list. At that time, she was only 40 kg tall at 1 meter 68, and her left ventricular ejection fraction (LVEF) was only 16%, while a healthy adult had a normal LVEF value of 55% to 65%.
Even if the whole family is mentally and financially prepared, the body may not be eligible. Liao Cui's antibody in the body is too high, and the rejection reaction after transplantation will be very serious. The doctor told her that she would either not be able to get off the operating table, or there would be a rejection reaction after doing it, the operation would be done in vain, the money would be spent, and the people would be gone.
To survive, Liao Cui had only one last way: implanting a left ventricular assist device, that is, installing an artificial heart.
Add an "engine" to the heart
Liao Cui once saw from the news that in October 2018, Wuhan Union Hospital successfully completed the first artificial heart implant surgery in Hubei Province.
Later, in the doctor's office, Liao Saw a Mannequin fitted with a Left Ventricular Assist Device (LVAD). She found that the artificial mind was different from what she had imagined.
Liao Cui originally thought that the artificial heart was to take out the original heart and install a mechanical heart. Her vision has similarities to the all-artificial heart (TAH). At present, there are three TAH in the global clinical application stage, due to high price, irreversibility and other reasons, its application is still facing many problems.
Li Qianzhen, deputy chief physician of the Department of Cardiac Surgery of Union Hospital Affiliated to Fujian Medical University, also believes that TAH is not mature enough.
After LVAD is implanted, the patient's own heart is still there, but the tip of the left ventricle will have an extra pump the size of a golf ball. After the blood from the left ventricle flows into the pump from the inlet tube, the pump will rotate at high speed under the action of the external controller, pushing the blood through the artificial blood vessel into the aorta, thereby maintaining blood circulation.
Li Qianzhen likened the artificial heart to a new car engine, "The heart is your original engine, after this engine is weak, we will install a new engine for you, which will replace or help the original engine to work, and your heart can also be rested." 」
In June 2019, Liao Cui was hospitalized while waiting for surgery. To be implanted in her body is a new generation of fully magnetically levitated artificial heart CIFU VAD developed by a medical technology company in Suzhou, with a diameter of 50 mm, a thickness of 26 mm and a weight of about 180 grams.
From the classification of the development of artificial heart technology in the Intermacs annual report of the United States, VAD is generally divided into two generations: pulsatile VAD and rotary VAD.
The older generation is a pulsating VAD, taking the Novacor produced by World Heart in the United States as an example, it can simulate the movement of the heart, through the contraction and relaxation of the air sacs in the device, pumping blood to the aorta, but its disadvantages are obvious: the volume is too large, can only be implanted in the abdominal cavity; the air sacs and mechanical moving parts are easily damaged; easy to form blood clots around the valve. Overall, the clinical effect of pulsatile VAD is not ideal.
Based on the concept of making VAD better complete the pumping function, a new generation of rotary VAD has emerged, and according to different technologies, the international medical community has distinguished it into sliding (contact) bearing type, hydrodynamic suspension type, and full magnetic suspension type. Among them, the fully magnetic levitation artificial heart is delicate and compact, and the degree of damage to the blood is lower, and it has become the mainstream artificial heart product in the world.
Classification of VADs
Image source: Provided by Liao Cui
Therefore, for Liao Cui, implantation of a fully magnetic levitation artificial heart is less invasive, and the probability of adverse events such as gastrointestinal bleeding, stroke and infection after surgery is also smaller.
Fitted with an artificial heart, close to normal life
While waiting for surgery, Liao Cui and her husband often do handicrafts, draw and paste diamond paintings in the ward, and also take the initiative to help the children in the same ward learn English.
While waiting for the operation, Liao Cui and her husband finished painting the paintings in a hand-drawn book (Source: Provided by Liao Cui)
Looking forward to returning to normal life after being discharged from the hospital, Liao Cui made a "must-eat list after surgery", which included snail powder, skewers, chutney powder, hot pot and other foods she liked before she fell ill. But in fact, her vomiting did not stop until the 4th month after discharge, after which she followed the list and fulfilled her wishes one by one.
The operation was scheduled for August 30, 2019, and Liao Cui, afraid that she would not be able to wake up again, told her husband all the password information and sent a circle of friends to say goodbye to her friends, saying "goodbye".
In the early morning of the operation, Liao Cui wrote "Goodbye with a Chance" in the circle of friends (Source: Provided by Liao Cui)
Fortunately, the surgery was successful and a week later, Liao Cui was transferred from the ICU to the general ward. She noticed something different in her chest area, as if something had been added, where the impeller of CH-VAD was working at more than 2,000 revolutions per minute.
After the operation, a white cable thread passed out from Liao Cui's lower abdomen, which was connected to the blood pump in the body at one end and the external controller at the other end, and the part left outside the body was about 60 centimeters long, similar in thickness to the charging cable of the mobile phone. In order to prevent infection, she disinfects and changes the parts where the cables are threaded every day.
The in vitro controller is connected to 2 batteries by wires, and when 1 is working, the other 1 is not enabled as a backup. Each implanter receives 6 batteries from the manufacturer, each of which lasts for about 8 hours. Liao Cui always has 1 battery in the car, and every time before going out, she will check the battery to make sure it is full.
The controller and 2 batteries add up to about 1.4 kg, which is similar to carrying 3 bottles of 500 ml mineral water with him, and Liao Cui, who straddles them obliquely, often feels that his shoulders are strangled.
In September 2019, Liu Yiming (pseudonym), who suffered from the same condition as Liao Cui, also implanted an artificial heart, and when the air entered the lungs unimpeded and was exhaled unimpeded, he found that he did not have to breathe heavily, nor did he have the previous feeling of holding his breath.
At present, Liu Yiming's sleep and drinking water cannot fully return to the state before the illness, but he is satisfied. When he goes out, he used to bring 2 more batteries in addition to the 2 batteries necessary for the equipment. After knowing Liao Cui, Liu Yiming told her to go out and wear a vest with multiple pockets, and put the battery into the two side pockets to reduce the burden on the shoulders.
Batteries for artificial hearts
Image source: Provided by Liao Cui
Since the controller and battery may be damaged after contact with water, the patient should put them in a shower bag when bathing and attach a waterproof tape to the body. At the same time, they can no longer swim, take in hot springs, and can no longer do water-related activities.
In addition, to avoid exposure to high magnetic field environments, they need to stay as far away from security checks and induction cookers as possible.
After implantation of an artificial heart, patients cannot fully return to their previous lives. Liu Yiming had been a high school teacher for more than ten years, and he wanted to return to his post after surgery, but the school authorities were worried about his health and arranged for him to do some work to sort out materials and help new teachers conduct project research.
Later, due to the heat in the office and the long-term sitting, Liu Yiming's abdominal wound showed signs of suppuration. After much thought, he asked the school for sick leave and put more energy into talk show performances.
With an implanted artificial heart, not many people can continue their previous jobs or find new ones. Most of the 18-member artificial heart implanter group formed by Liao Cui did not have jobs. Liao Cui believes that if you think from another position, employers will be worried about accidents.
In addition, after implanting an artificial heart, some implanters also face psychological difficulties in acceptance, such as having a "sense of incompleteness" and believing that there is something in the body that does not belong to them. Liu Yiming felt that walking on the road seemed to be someone looking at him, and sometimes after explaining to the subway staff the reason for not being able to check security, their eyes would make him uncomfortable.
Liu Yiming does not want to be regarded as an "abnormal person" and a "patient", but only wants to become an ordinary person. When performing a talk show, he hides the cables, controllers and batteries to avoid tension in the audience and to avoid feeling weird.
Mechanisms need to be put in place to improve the quality of life of implanters
Liao Cui and Liu Yiming can be said to be lucky to some extent, because not every patient with end-stage heart failure can implant an artificial heart.
Last year, Li Qianzhen encountered a patient who missed the opportunity to implant and eventually died. Li Qianzhen had suggested that he implant the artificial heart immediately, but considering the cost, he hesitated for two weeks before agreeing, when his condition deteriorated and his body could no longer withstand the implantation surgery. Whenever she thought of this patient, Li Qianzhen felt very sorry.
According to the research and development company, the artificial heart has three functions: as an adjuvant therapy (BTR) before the restoration of cardiac function, providing short-term support for patients and can be withdrawn when their heart function is restored; as a transitional treatment (BTT) before heart transplantation, it buys more time for patients to wait for the heart source; as a long-term treatment (DT), it provides permanent replacement for patients.
Liao Cui and Liu Yiming knew a Hubei patient who underwent heart removal surgery in July 2021 after the implantation of the artificial heart, and the heart function returned to normal two years after the implantation. Liu Yiming was very envious of him: "I would like to take it out and replace it with myself, or I still have to work hard myself."
But Liu Yiming knew that his hope of withdrawing the plane was not great. During the review, the doctor told him that as an old patient for more than ten years, his heart muscle fibers had been partially calcified due to long-term rupture, and it was difficult to recover even with the assistance of an artificial heart.
Two and a half years after the implantation, Liao Cui also learned from the doctor that her heart function did not change compared with before, "as long as it does not deteriorate, it is good news for you, you don't expect it to get better." 」
This means that Liao Cui and Liu Yiming may need to carry an artificial heart for life.
Schematic diagram of Tze Fu VAD
Source: The official website of a medical technology company in Suzhou
In fact, long-term treatment is the most mainstream application scenario for artificial heart, and more than 50% of implanters worldwide fall into this situation.
In this context, how to enable implanters to have a higher quality of life has become one of the key issues that VAD developers are concerned about.
The relevant personnel of the medical technology company in Suzhou, which developed VAD, told occasional cures that the efficacy of VAD depends not only on the performance of the device, but also on the choice of treatment timing and the long-term management of patients after surgery.
Therefore, on the one hand, it is necessary to establish a heart failure management network for each region to improve the quality of patient selection, on the other hand, in order to improve the long-term treatment effect, it is necessary to provide technical support for the use of VAD at any time after each patient returns to his home after surgery, until the end of use.
In the selection of patients, the assessment of the implanter should be comprehensive, including medical, social, psychological, physical and cognitive assessments.
Before implantation surgery, patients must also undergo a complete and adequate preoperative examination. Because for patients with severe illness, if implantation is chosen without adequate examination, their long-term quality of life may not be guaranteed, and there is also a risk of perioperative infection and multi-organ failure.
Ideally, multidisciplinary experts such as cardiology, cardiac surgery, nursing team, and critical care team should participate in the diagnosis and treatment of artificial heart implants, that is, the multidisciplinary diagnosis and treatment model (MDT) should be used.
In addition, in order to enable implanters to have a higher quality of life, it is also necessary to do a good job in the long-term management of patients after surgery.
After implantation of the artificial heart, patients must develop new living habits: change the dressing every day, take anticoagulant drugs, try to avoid the device touching the water, do not approach the high magnetic field environment, and adjust the past exercise mode. These all put forward certain requirements for patient compliance, but not everyone can strictly follow the doctor's instructions at all times.
At the same time, implanters may encounter various problems, such as "feeling incomplete" and how to deal with the highest level of alarms issued by the controller.
For these two reasons, it is necessary to establish a multi-party VAD postoperative management system. Li Qianzhen mentioned that some hospitals will carry out psychological intervention for implanters, and he hopes that in the future, personnel with professional backgrounds can regularly follow up patients and provide psychological support.
In June 2021, the U.S. Centers for Medicare and Medicaid Services (CMS) released the National Medical Coverage Indicator (NCD) for VAD, which defines the composition of the medical team responsible for implant management —in addition to at least 1 physician with cardiothoracic surgery experience, 1 cardiologist trained in advanced heart failure, 1 VAD program coordinator, 1 social worker, and 1 palliative care specialist.
According to the medical technology company in Suzhou, in Europe and the United States, the full-cycle treatment management of implanters is usually included in the VAD program of the hospital. In this project, social workers and manufacturers such as doctors, coordinators, and rehabilitation practitioners will jointly provide help and services for implanters. The coordinator generally has a nursing background and belongs to the registered nurse, and when the implanter encounters difficulties, the coordinator will contact the corresponding professional according to his needs.
Schematic diagram of the foreign VAD coordinator mechanism
Image source: Provided by Liao Cui
In the mainland, a similar postoperative management system has yet to be established, and at present, doctors and manufacturers mainly assist implanters to do a good job in management.
Li Qianzhen said that in his hospital, within 1 year after the implanter was discharged from the hospital, he should come to the hospital every three months for re-examination, such as cardiac ultrasound and blood draw, and after 1 year of discharge, the frequency of re-examination was changed to once every six months.
Each patient with Mobil VAD is followed by 1 engineer from the manufacturer. During the hospitalization, engineers will teach patients and their families how to change batteries, maintain equipment, and review their operations. After discharge, they will also visit patients and solve their problems.
Liao Cui introduced that her engineers are on call 24 hours a day and can be contacted at any time. On the eighth day of the first month of this year, she made a mistake in the shower and soaked the battery with water. Although the equipment did not alarm, the next day, the engineer who rushed from Suzhou to Wuhan accompanied her to Concord to replace the controller.
In the ward, Liao Cui's postoperative doctor and a nurse connected her to ECG monitoring to observe her heart rate and blood pressure. Under the guidance of the engineer, the cable was pulled out of the old equipment, and Liao Cui's heart-tip pump temporarily stopped working, and at that moment, she was extremely nervous.
A few seconds later, as the cables were plugged into the new controller, the pump was running at high speed again. Everything is back to business.
Say goodbye to your pre-illness self
On September 14, 2021, the day of her 33rd birthday, Liao Cui received a gift from her husband: a women's leather bag, the color is her usual preference of light pink, can be carried or crossed obliquely, with a thin strap, which is also her favorite style.
After putting batteries and other devices from the packaging provided by the manufacturer into the new bag, she found that she could not see the difference with the fashionable women on the street, and was not as conspicuous as before.
Liao Cui liked this full-body photo
Image source: Provided by Liao Cui
She is actively adapting to her new life. No longer able to drift and swim like before she fell ill, she developed new hobbies – reading, wearing makeup, and playing table tennis and badminton with the children in the same community. Unable to go out to work, she carefully took care of the online fruit shop and tried to run the business better and better.
Liao Cui gradually likes her current life: get up at 7:30 every day, send Tiantian to kindergarten; work on time at 9 o'clock; read a book or brush a drama in the afternoon, take Tiantian home after sleeping for 1 hour, take her to the square at 5 o'clock; after dinner, accompany Tiantian to read picture books, draw or practice words; wait for her daughter to sleep, and then enter the working state.
She was ready to spend her life with an artificial heart. Before the doctor told her that the longest record of artificial heart use abroad was 11 years, she made a wish in her heart: to create a new record.
Liu Yiming also slowly said goodbye to himself before he fell ill. Last year, with the mentality of "if you can't see it, you won't miss it", he gave badminton rackets, skis, and swimming equipment to others. Unexpectedly, after sending it out, he really put it down.
A deeper level of letting go happened before the start of the talk show. During that time, Liu Yiming constantly asked himself: Can I go back to school and my previous life? Am I not accepting myself enough? Finally he gave his own answer: it was time to start over.
In October 2021, Liu Yiming launched his first special performance "Fang Xin Wei Wei". He wanted to start from the "heart" and look at everything in the past from a different perspective, "You are born again."
Liao Cui had similar thoughts. Every night before going to bed, the house became quiet, and she could clearly hear a "buzzing" sound when she leaned on the pillow. She knew that it was the sound of the blood pump at the tip of her heart moving round and round.
"What's it like to hear this sound?"
She said it meant I was alive.
(Liu Yiming is a pseudonym in the text)
This article was reviewed by Li Qianzhen, deputy chief physician of the Department of Cardiac Surgery of Union Hospital Affiliated to Fujian Medical University
Author: Su Zihan
Producer: Li Hualiang
First image source: Provided by Liao Cui
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5、National Coverage Determination (NCD) 20.9.1 Ventricular Assist Devices (VADs)