During the lively physical education class and the hustle and bustle of campus classes in elementary school, I could only sit alone in the classroom and read the books that had been turned over many times, and my classmates were afraid of accidentally touching me, the "glass man".
A few years later, it turned out that my previous diagnosis was misdiagnosed and that my congenital heart disease could be cured by surgery.
Always have nosebleeds, but can't find the cause
One summer night when I was four years old, I was crouching on the ground, nosebleeds running down, and my mother brought me a basin of cool water and patted me on the neck. The nosebleed still couldn't be stopped, and I was admitted to the ENT department of the hospital, which was the first page of my life that I began to have clear memories.
Since then, I have been bleeding my nose every day every summer, and the gushing blood can invade my life at any time, place, and place. My mother told me that it was from then that I went from being fat and pouty to being yellow-faced and thin.
I often feel dizzy, but I went to the hospital to check the blood and found nothing abnormal, and I saw the ENT department many times, and I couldn't find the cause of the bleeding. I gave injections, took medicine, tried all kinds of remedies that the old people found, and was even taken to the home of a country god to receive the ritual of banishing illness.
At a young age, I obediently accepted everything that fate arranged for me, and in the days when I did not bleed my nose, I was still like every ordinary child, naïve, optimistic, and playful.
An unexpected murmur is heard, and rheumatic heart disease is diagnosed
More than a year passed like this, and I was taken to the hospital for examination because of a cold and fever. As a regular procedure, the doctor listened to my heart and lungs with a stethoscope, frowned and said, "There is a murmur in the heart, and when the cold is better, check to see if there is any murmur."
Later, I was taken to the cardiology department for ultrasound, and the doctor's diagnosis was: rheumatic heart disease.
For mom and dad, it's a thunderbolt. In their eyes, rheumatic heart disease was a very serious disease, which at the time represented incurable, lifelong pain, and multiple surgeries. At that time, although I was thin, I could still eat, drink, run and jump, and I never said that my heart hurt. So, apart from regular check-ups and not being able to participate in sports, I was not asked for further treatment.
If nosebleeds brought me only intermittent inconvenience and physical weakness, then the diagnosis of heart disease changed my entire childhood.
Entering elementary school, I don't know for what reason, I was quickly isolated by the "big sister" in the class. Coupled with my always weak body, my lack of participation in sports and even my misfit in recess games, it was only natural to become the "lone ranger" in my class. My classmates, on the one hand, do not like to play with me, on the other hand, they are also afraid of accidentally bumping into me, the "glass man".
In the days that followed, I relied heavily on the few close companions I had and no longer intended to integrate into the community. In the hustle and bustle of campus classes and lively physical education classes, I sat alone in the classroom, flipped through books that had been turned many times, and since then I have cultivated a lifelong proclivity for loving books.
Figure 丨 pxfuel
Long-acting penicillin and can not catch a cold
After that, because of chest pain, my parents took me to the provincial capital for examination and got the same diagnosis: rheumatic heart disease. The treatment given by the doctor is one injection of long-acting penicillin per month, not to catch a cold.
In the gap between medical treatment, I followed my parents to visit Uncle Y, who was hospitalized in the provincial city hospital, he was the leader of my father, he had always cared for my father, and he was also a good uncle who would press me for money and send me new clothes. In the ward, Uncle Y looked at me with a smile, praised me for being well-behaved and sensible, and then turned his head and asked his father seriously: "Are you really not considering having another one?" ”
It was the era of family planning, but my father's unit planned to give a "pass" to have a second child because of my illness. I listened carefully to the adults and heard the polite but firm refusal of my parents.
At the beginning of each month, I went to the injection of long-acting penicillin with my mother like I was on the execution ground, and I trembled every time. The nurse took out enough syringes thick with a few fingers, mixed the powdered medicine with the liquid, and turned into a turbid liquid into the syringe, which was a whole tube. Such an injection will take a long time each time, and the pain will continue for several minutes as the injection enters the flesh.
After the injection, I would be limp for days. So, for a whole year, at the beginning of each month, I would be seen limping along the road.
In addition to the injection, another doctor's advice also made me tremble - not to catch a cold.
It was my playful age, and occasionally I caught a cold, and I would tell my mother nervously, and then cautiously peek at my father, who was silent on the side. And then every time he will be scolded: "Why don't you obey, don't catch a cold if you say it!" "Cold again! How many times do you say it without listening! "The blame that my parents worried made me feel guilty and terrified.
I knew I was sick, but I still couldn't understand the nervousness and concern of adults, after all, I was only a child under ten years old.
This is probably the most gratifying misdiagnosis
The following summer, my parents took pains to hang up the number of Beijing Children's Hospital. Having never left the town, I felt fresh about everything in the capital. The first time I visited a big supermarket, visited a zoo, saw such a wide road, took a regular bus... I went to the Forbidden City, the Grand View Garden, and even climbed the Great Wall. This made my mother scold the doctor on the day of the doctor's visit: "Have a heart attack and take it to climb the Great Wall, don't you die?" "But I was the first to climb to Haohanpo, and I wasn't tired at all."
In the children's hospital, I re-did a series of tests such as electrocardiogram and color ultrasound, and got a shocked but overjoyed news from my mother: all previous diagnoses were misdiagnosed. Of course, it's not that my heart isn't sick, but the real problem: patent ductus arteriosus.
The doctor said that this is a very mild congenital heart disease that can be completely cured by surgery, which is probably the most gratifying misdiagnosis. The doctor told his mother: "Go back and raise money, raise money to do surgery next year." Mom nodded again and again and thanked the doctor.
But the doctor's words were heavy to me, I knew very well that my family was not rich, worried that my parents had worked hard to cure my illness, and worried that this family would be in trouble because of me. Walking out of the hospital, I saw that my mother's brows finally relaxed, and she gently hugged me and lowered her head and said, "Don't worry, my mother has earned some money in the past two years of setting up a stall, which is enough to operate on you." The worries in my heart were also dispelled by my mother.
Figure 丨 Pikist
Traditional open-heart surgery or new technology interventional surgery
For my disease, the doctor gave two surgical options. One is a more secure traditional surgical method, that is, open heart surgery that requires "knife action"; The other is interventional surgery, which was not popular in China at that time, blocking unclosed blood vessels through arteries, no need to open the chest, no difficult wound pain and unsightly scars, and the only traces left were only a few needle-eye-sized wounds.
It has been more than 20 years since I underwent surgery, and the level of medical treatment at that time was naturally not the same as it is now. Therefore, a considerable number of parents will choose traditional open heart surgery for their children due to financial ability and risk concerns. But my parents decided to undergo interventional surgery, and even the tens of thousands of dollars in surgery fees made them feel difficult. Looking back, my parents must have gone through a lot of painful suffering, exhausting themselves for every illness, diagnosis and treatment.
So, in November of that year, my parents took me to Beijing again and admitted me to the thoracic surgery ward of the Children's Hospital. It was a large eight-bed ward, and we all had different symptoms, but everyone else except me had to go through the pain of opening our chests.
The next day, the two little girls in the ward were ready to go to the operating table, and they were usually giggling, and they finally cried in fear when they were about to be pushed to the operating room. I lay at the end of the bed and watched the various people in the ward move and busy, watch them be pushed out of the ward, and then be pushed back to the monitoring unit at the end of the corridor outside the ward for most of the day.
I'm not scared and I'm even looking forward to the surgery
Finally, it was my turn, and I obediently prepared all the preoperative preparations as the nurse had instructed, waiting to be taken to the operating room. The parents who have been guarding the ward have deep tension and worry in their eyes, and a sense of quiet depression quietly wells up in the ward, and the usual fairy tales and laughter have disappeared.
But not only was I not nervous, not afraid, but I was even looking forward to it, like waiting for surgery to equip me with a heart that beats, hurts, and senses the thousands of fireworks in the world.
Soon, the nurse came in to inform me that a temporary surgery had been added, and my operation was postponed until a few hours later. So, for the next few hours, I kept urging my mother to ask, just as anxious as a student was looking forward to class. I couldn't wait to get the surgery done, like completing a game that had waited for the whole childhood.
When the doctor carried me to the operating table and tied my hands and feet, the last thing I heard was: for a while she won't hear what we say... When I woke up again, my vision was still a little blurry, and I wanted to move my body, but I found that my legs seemed to be tied to the guardrail on the edge of the bed, struggling several times and unable to move, and I remembered in a trance that I had just completed surgery.
The recovery period after the operation was very short, and I was able to be discharged from the hospital in two days, and my cousin, who was studying at a university in Beijing, specially came to pick me up and discharge me. I saw my cousin, pulled her to the side of the hospital bed, smiled mysteriously and asked, "Would you like to see my surgical wound?" As if frightened, my cousin took several steps back, shook her head and waved her hand repeatedly: "I don't look at it, I don't look..." I put my hand on the wound, flattened my mouth, and muttered in a low voice: "It's just a few needle eyes." ”
This was the operation when I was ten years old, an operation in which everyone was like a big enemy, but I was unaware of it.
Life after surgery
After completing the big event of surgery, it seemed that it was time for my life to return to normal. However, in fact, the pain of life only really begins to unleash its power at this time.
As my body gradually recovered, all kinds of discomfort quietly disappeared from my life, but I was still banned from sports and any stimulating recreational activities under the label of "heart patient". I am still the "glass man" and "sister Lin" in the eyes of others, still withdrawn, even high.
I have just been pulled out of the shadow of illness by my relatives, and I should cherish life and love life more than ordinary children, but I have regarded life as a painful torture countless times, and I just want to be free from it. It wasn't until 2015 that a new diagnosis changed my life again and I was diagnosed with major depressive disorder.
To this day, I still take medication every day and have regular counseling. From the heart to the psyche, I have struggled with illness for most of my life, and I will continue to do so in the future.
So, the story about depression is saved for next time.
Doctor reviews
Dai Tian Yi | Former attending physician of the Department of Cardiology of Beijing Anzhen Hospital
Patent ductus arteriosus is a relatively common congenital cardiovascular malformation, accounting for 10%~21% of congenital heart disease, and 1 case can occur in every 2500~5000 surviving newborns. The male-to-female ratio is about 1:3, and the incidence of premature infants is significantly increased.
The ductus arteriosus is the passage between the aorta and the pulmonary artery and is called "pending" rather than "defective" because it is the normal blood flow channel during the fetal period. The fetus does not take in oxygen through the lungs, but through the umbilical vessels, and needs to maintain normal blood circulation through the ductus arteriosus.
After the newborn begins breathing, the ductus arteriosus usually closes within the first few months of birth due to increased partial pressure of oxygen in the arteries and decreased pressure in the ducts, from which the blood flow of the aorta and the pulmonary artery is completely separated. If it persists after 1 year of age, it is patent ductus arteriosus (PDA).
Figure 丨Image time
If blood flow in the ductus arteriosus is small, no symptoms can occur; Large shunts can cause fatigue, palpitations, chest tightness, hemoptysis, skin bruis, etc., and lead to limited growth and development of children. The author's epistaxis is not a typical symptom, and the disease generally does not cause chest pain (many cardiovascular diseases do not have chest pain as the main manifestation), but it may make people more likely to "catch a cold".
Most patients can detect a heart murmur by auscultation, echocardiography is the most common test to diagnose patent ductus arteriosus, and the diagnosis can also be evaluated at the same time as the catheter structure and shunt, providing guidance for doctors to plan the next step in the treatment plan. There are many disorders that can cause heart murmurs and shunts, and further investigations are needed when echocardiography does not confirm the condition.
After the diagnosis is confirmed, doctors may choose conservative management, medication, surgery, or interventional therapy. In the past, surgical thoracotomy was the only surgical method to treat the disease, and in 1967, the world's first patent ductus arteriosus emboli closure surgery was successful, and in 1983, mainland China carried out patent ductus arteriosus interventional treatment.
Interventional therapy, in which a closure device or coil is placed through a vein or artery to block the shunt at the interface between the aorta and the pulmonary artery, is usually done in childhood and can also be used in adults and the elderly. Compared with surgery, interventional treatment has less trauma, faster recovery, and high success rate and safety.
If treated promptly, most patients can return to normal heart size and function. If the disease progresses, irreversible changes may occur in the pulmonary blood vessels and the opportunity for surgery may be lost.
Those who successfully repair congenital heart disease without sequelae do not need to be "glass people" all the time, and can refer to the general population guidelines for physical activity. Even if you need to limit the amount of activity, you are encouraged to stay active within the limits rather than prohibiting physical contact or all activity.
In addition, some patients with cardiovascular diseases have a long medical treatment process, repeated conditions, and certain misunderstandings about the disease, often accompanied by anxiety and depression. Therefore, after cardiovascular disease is controlled, many uncomfortable symptoms still appear repeatedly, and it is necessary to see a psychiatric and psychological department at this time, so that the "two hearts" can recover at the same time and improve the quality of life in the future.
bibliography
[1] Structural Cardiology Group, Cardiovascular Disease Branch of Chinese Medical Association, Structural Cardiology Professional Committee of Cardiovascular Physician Branch of Chinese Medical Doctor Association. Chinese Guidelines for Interventional Treatment of Patent Arterial Ductus Occlusion 2017. Chinese Journal of Interventional Cardiology. 2017; 25(5):241-248.
[2] Longmuir PE, Brothers JA, de Ferranti SD, Hayman LL, Van Hare GF, Matherne GP, Davis CK, Joy EA, McCrindle BW; American Heart Association Atherosclerosis, Hypertension and Obesity in Youth Committee of the Council on Cardiovascular Disease in the Young. Promotion of physical activity for children and adults with congenital heart disease: a scientific statement from the American Heart Association. Circulation. 2013;127(21):2147-59.
[3] Stout KK, Daniels CJ, Aboulhosn JA, Bozkurt B, Broberg CS, Colman JM, Crumb SR, Dearani JA, Fuller S, Gurvitz M, Khairy P, Landzberg MJ, Saidi A, Valente AM, Van Hare GF. 2018 AHA/ACC Guideline for the Management of Adults With Congenital Heart Disease: A Report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines. J Am Coll Cardiol. 2019;73(12):e81-e192.
[4] Cardiovascular Disease Professional Committee of Chinese Rehabilitation Society, Cardiovascular and Cerebrovascular Disease Professional Committee of Chinese Gerontology Society. Chinese expert consensus on psychological prescription for patients in cardiovascular department. 2014; 42(1):6-13.
Personal experience sharing does not constitute diagnosis and treatment advice, and cannot replace the doctor's individualized judgment of specific patients.
Written by Shin
Editor: Dai Tian Yi