More than a hundred years ago, the American doctor Trudeau once had a very famous description of the profession of doctor, “sometimes to cure, often to help, always to comfort. “Modern medicine has developed to be very powerful today, but there are still too many problems that cannot be solved by science.
Today’s narrator is Xiao Jiang, whose mother was admitted to the hospital in October last year because of a severe diarrhea that no one could have expected at the time would lead to two ICU admissions, several surgeries, and a cost of more than $100,000, bringing a nightmare to the whole family that lasted six months.
For a long time, no one knew how it all happened, and the family could only wait for the verdict of fate in countless times of pain, helplessness and despair. In this process, they also deeply appreciate how much hope the help and comfort from doctors can bring to patients when modern medicine cannot go for a cure.
-1 –
An ordinary day, the beginning of a nightmare
In October 2019, my mother returned home to Hubei from Guangzhou, where she lives, to play. On an ordinary sunny morning, she bought soy milk and doughnuts downstairs and enjoyed a long-overdue “morning” meal.
That afternoon, she began to feel back pain. This was a common symptom for my mother, who had undergone cervical cancer surgery six years ago and had not had a recurrence since then, but the radiation treatment had caused her ureteral stenosis, which required a long-term stent to be placed and replaced every few months. She has been a long-time patient of the urology department of Hospital A in Guangzhou, because the ureteral stent becomes blocked every few months and she needs to go to the hospital for surgical replacement in order to relieve the ensuing fever, back pain, edema, and deteriorating kidney function.
But in the meantime, in addition to all the familiar kidney symptoms, she started to have a little diarrhea that night. At that time, she just thought she should have eaten badly at the stall in the morning and didn’t pay much attention to it.
After returning to her place of residence, Guangzhou, from Hubei, her mother went to the provincial key hospital A, where she often goes. The doctor understood her condition and, as usual, immediately arranged for her to be hospitalized, put on antibiotics, and have her ureteral stent changed …… A set of process treatment came down, and her condition improved significantly, just that the diarrhea was still recurrent and unchanged. Not long after another visit to the hospital, there were symptoms of deteriorating kidney function and severe diarrhea again.
We didn’t know the cause of her diarrhea, but she wasn’t urinating, and we all knew why. So my dad rushed my mom to Hospital A the next day. Since my mom’s back pain, edema and diarrhea came back and forth these few times, we suspected that the diarrhea might have something to do with the ureter. My dad thought that the chief was experienced and should be able to judge the condition better, so he registered with the chief of urology at Hospital A.
That morning, the two of them drove to the hospital early in the morning and waited in the hallway for the whole morning. During the waiting time, my dad kept making drafts in his head, as if he was preparing a time-strapped defense. Years of experience in seeing patients had taught them how to be a patient that made the doctor comfortable. When it was their turn, my dad tried to make the best use of the limited time he had to explain my mom’s condition to the director in a concise manner.
The director listened and briefly looked at the case and said, “It hasn’t been long since you changed your tubes, just over a week? “
My dad replied, “Yes, yes, but the symptoms of edema, back pain, and lack of urination have returned, and we are surprised that they usually come a few months after the tube change, and that she has diarrhea. “
The director didn’t say anything after hearing this and told my mom to go ahead and get an X-ray.
My dad took my mom to the X-ray line and went back to the director when the results came back. After reading the film, the director said, “It’s no big deal, the tube is fine. I’ll prescribe some albumin for you, and you can go to a nearby hospital to get it. “
My dad couldn’t figure out why he needed albumin, but looking at the director’s busy, serious look, he didn’t dare ask too many questions, thinking, “The director said it’s fine, so let’s go back and get albumin. “
But to my surprise, a few days after returning home, my mom’s edema became more and more severe, and her face swelled up like a balloon at that time, and it felt like her skin was stretched to the point of glowing.
My dad felt that the situation could not wait any longer, so he sent my mom to the emergency department of Hospital A. Another tube exchange was done that afternoon, and that night my mom managed to pass a lot of urine, and the kidney crisis was temporarily lifted.
-2-
Urology and Gastroenterology “kicked the ball around”
Although the kidney crisis was temporarily solved, my mom’s diarrhea was getting worse and worse, and it was watery more than a dozen times a day. At that time, she was admitted to the urology department, and the urologist, who was at her wits’ end, arranged a gastroenterology consultation for her.
At that time, my mother had been in diarrhea for several days, and her whole body was in a state of weakness. My father was in the hospital room every day, and when he heard that the gastroenterologist was coming, he finally got a glimmer of hope. He was so afraid of missing the consultation that he simply stopped doing anything, didn’t go to work, didn’t shop, didn’t go home, and stayed by my mom’s bedside all the time, waiting to report my mom’s condition to the gastroenterology doctor.
As a result, he waited anxiously for two whole days, but he couldn’t get a response from the left or the right. He ran to inquire about the situation and learned from the doctor on duty that “the hospital has a 48-hour consultation time limit, and the gastroenterology department can send a person at the last minute of the 48 hours, so we can’t do anything with him even though people are here according to the rules. “
Sure enough, after waiting for two days, a doctor came to the gastroenterology department in the evening of the second day.
My father, like a life-saver, told the doctor a lot, but the doctor did not do any special tests, but only prescribed the usual anti-diarrheal drugs to us.
The antidiarrheal medicine did not work for my mom, and we suspected that there must be a deeper reason for her diarrhea, but no doctor seemed to be able to answer our questions.
My mom stayed in the urology department for a few more days, at which point the urologist examined her and decided that it was a bacterial infection, and that she had taken all the medication she needed to take and had almost had all the shots she needed, so they couldn’t help with the diarrhea, so they informed my mom to hurry up and get out of the hospital. But at that time, my mother’s condition never improved, her diarrhea was very serious and she was very weak.
However, since the urology department had given her an ultimatum to be discharged, my mother, who was very sick, had to register herself with a specialist in the gastroenterology department of Hospital A, hoping to be admitted to the gastroenterology department and find out the cause of her illness. What she didn’t expect was that after the old specialist asked her about the situation, she was told that it wasn’t a gastrointestinal problem and that she would have to seek a consultation with urology or nephrology; she then went to see the nephrologist, who looked at her creatinine index and said it wasn’t a kidney problem ……
This day, diarrhea to the point of not being able to walk normally, the mother was kicked around by various departments as if it were a ball, emotional almost collapse, obviously in one of the best hospitals in the province, but because of the lack of treatment to go home and wait for death?
-3 –
After diarrhea to acidosis, my mother developed a second personality
That night, my mom suffered the first resuscitation of her life. The diarrhea caused severe acidosis and electrolyte imbalance in her body. At this time, she was not very conscious, sometimes she was drowsy, sometimes she was serious and gentle, as if she had a second personality and spoke loudly and exuberantly.
I hurriedly took leave and flew back to Guangzhou, and have been watching over her every day since.
In the urology ward, there were so many instruments by my mother’s bedside that I could not see her face until I got closer. She was facing the ceiling, her whole body was very dull, I called her loudly, she opened her eyes, but her eyes looked very lax, as if she did not see me.
I was with her that night. She kept having diarrhea, and the large pads that were underneath her for about a square meter got all wet in no time. Then I had to change her and turn her over, but soon it was wet again, and it didn’t stop throughout the night.
I felt as if my father was panicking, and when I came back, it was as if he had found a lifeline, telling the doctors and nurses, “This is my daughter! She’s back, she’s back to see her mother! “He seemed to mean that it was up to me to save my mom’s life, and I couldn’t bring myself to grieve at all, thinking, “No, they’re all down, it’s up to me. “
I’ve never actually seen my mom like that. In my memory of the past 30 years, she’s always been a very serious, strong person. Even during her cancer, she hardly ever showed her weakness. This was the first time I experienced that my mom and dad were depending on me.
The doctor said that Mom’s diarrhea had reached the level of cholera and that all vital indicators were on the verge of danger. But no one knew how this calamity had befallen Mom, and no doctor could answer the exact cause of the disease, not even an inference, and the final recommendation was to send Mom to the ICU to save her life.
It was almost winter and the weather was getting cold, so we wrapped my mom up tightly and moved her to the ICU ward in another building. When we entered the elevator, my mom woke up a bit and the nurse asked her, “Do you know where you’re going now? “
My mom’s second personality suddenly appeared, and she opened her eyes and said boldly, “I’m in this hot place again! “
The whole elevator laughed, and I was amused, and then she passed out again.
-4 –
We spent our days wandering outside the ICU doors.
Like a group of homeless orphans
The electric door of the ICU is particularly thick, about five or six centimeters, with a tiny window on the door, as big as an A4 paper. When the door opened, we had to hand our mother over to the doctor. When the door closed, we were separated from our mother, she was inside, we were outside, and we could only see each other for half an hour a day.
We didn’t sleep much when we got home, and we ran to the hospital at dawn the next day and sat at the entrance of the ICU.
At noon, the doctor informed us that my mom would be pushed out for a checkup. As soon as my mom was pushed out, I was terrified. She was in a completely fainted state, her eyes were closed, her mouth was open, and her lips looked dry and stuck to her teeth – as if she hadn’t moved for a long time and had no life left in her.
We called her also completely unresponsive, no reaction at all. If she was called very loudly, the most she could do was to open her mouth and exhale a little bit of air with great effort to let us know that she was still alive.
I was very angry at that time, “After one night of resuscitation in the ICU, why did they resuscitate the person into this state? She was able to talk before she went in, but how did she become like this the next day? ”
During the waiting time, I kept brewing in my mind what I wanted to communicate with the doctor, and as soon as he arrived, I asked him about a few important indicators, including carbon dioxide binding capacity, which is a more important indicator of acidosis.
The doctor froze, not expecting me to ask this question, and he didn’t know it either. He hesitated, went back and checked the results and told me. When I heard the results, I asked him, “That wasn’t the number before my mom went in yesterday, and after she went in, that number became surprisingly severe? “
He seemed to be caught up in the question, probably the general family would not ask him such detailed indicators, so he told me, “We ICU is not specialized in treating diarrhea, we are responsible for saving the life of the patient, just monitoring some basic vital indicators for problems. “
At this time, I was worried and angry, and I didn’t know what I should do. Of course, we certainly did not dare to quarrel with the doctor, we were too humble as patients and patients’ families – we were already grateful that the doctor was willing to treat the disease. We were never very polite to the doctor, even a bit obsequious. So, even though I felt really angry at the time, I always kept my sanity and tried to speak as politely as possible. In fact, the doctor was quite nice, and he was quite serious and careful in the days afterwards, so I think he was probably just caught off guard by the questions at first.
But after that day, I was even more uneasy. I couldn’t sleep the day before, and I couldn’t sleep even more the next day.
Patients in the ICU are not very expressive, they are just lying there with tubes in place, unable to move or talk, so we were quite worried about mom at the time.
So I came up with an idea. We took a picture of our family members holding a banner saying “Go Mom” and hung it above Mom’s bed with a piece of paper next to it. The picture was hung above the mother’s bed with a piece of paper on it with her name, where she is from, what school she graduated from, what she does as a teacher, how many children she has at home and so on. In fact, I hope that others can see that perhaps the nurses and doctors know more about her, they will treat her more as a real living body, and treat her more humanely.
Otherwise, if people lie there without any reaction, it is easy to look like a tool. I went to see my mom once and a nurse held up the piece of paper and said, “Hey? Did you write this? I read this piece of paper to your mom every day. I was so happy, I thought it was working.
Mom was in the ICU for nine days, and while she was in there, we wandered around the ward and the hospital every day. Outside the hospital door was a river, and I sat with my dad and sister-in-law on the riverside greenway, staring blankly at the traffic and at the river, feeling like an orphan, completely unsettled.
-5-
A breeze in the mine
After coming out of the ICU, my mother’s diarrhea still hadn’t cleared up, but the gastroenterology department at Hospital A still refused to admit her. Before entering the ICU, the reason they gave for refusing admission was that “the patient’s condition was too serious”; after leaving the ICU, the reason they gave was that “The patient’s condition is no longer that serious. “
We had to be transferred back to the urology department and eventually went to Hospital B on the recommendation of a doctor, whose gastroenterology department agreed to accept the patient and that they could perform a fecal transplant to improve the patient’s digestive tract.
We were admitted with the intention of trying it out, we didn’t know what this hospital was like, and Hospital B was not as famous as Hospital A, which is a provincial priority.
But almost the day we arrived at Hospital B, we felt that Hospital B was the right place to go!
The doctor in charge of the bed was a very young woman with a ponytail, who spoke very cheerfully and came over to ask about my mother’s condition. We were a bit scared because in Hospital A, the doctor gave us the impression that he was always very busy and nervous, so we should not delay the doctor’s time, and we should talk quickly if we have anything to say. So when I talked to the bedside doctor at the beginning of hospital B, I habitually did not dare to talk to her in too much detail, and tried to talk as efficiently as possible, fearing that she would find us annoying.
But to my surprise, this doctor was able to find out that we had not made some points clear when she was listening to us, and she patiently asked us about some details that we had not covered. So we told her exactly what she asked us, exactly as she said. While we were talking, she took notes, and her big book was filled with pages of paper. I thought to myself, “This is too reliable, I’ll be sure this time! “
We all seemed to see a little bit of hope, just like people buried deep in a mine, suddenly feeling a breeze.
The next day the director also came over. It was obvious that he had already gone over my mother’s situation in advance and asked all the questions to the point. After the questions, he began to analyze the condition to the attending physicians, bedside doctors, and so on, and he gave many possibilities and corresponding screening methods in a very organized manner.
After he finished, I almost knelt down, I was really happy, I felt how this hospital is so reliable, very flattered. After being sick for so long, this is the first time that the doctor gave a specific direction of suspicion, instead of just taking medication, taking diarrhea medicine for diarrhea, replenishing water for lack of water, and replenishing potassium for lack of potassium, as before, without knowing what the condition is.
The doctor told us very clearly the possible causes of the disease and the subsequent examination and treatment process, which was the information we had been very anxious to know. It was like a reassurance to us that even though my mom was still having diarrhea, I was immediately relieved that we could finally start treating it!
-6-
Finally, we found the cause of the disease!
What followed was a series of comprehensive investigations, from the most basic ultrasound, CT, gastroscopy, colonoscopy, to PET CT full body scan, capsule microscopy, fecal transplantation, and finally there was no way out and tried hormone therapy ……
At first it was a small dose of hormones, and after a week of no effect, the director said to have some large dose of shock, and it didn’t work for three days. I felt devastated when all methods were exhausted and my mom still kept having diarrhea.
I have a deep impression of one night when it was still the Chinese New Year and there was no one on that floor of the ward. Mom woke me up early that morning, saying that she was going to have diarrhea again. After she finished, I helped her change into a new adult diaper and took the used diaper to throw it away.
I was walking alone in the empty hallway and saw a large electronic clock in the hallway that said 4:00 am. As I walked, I felt desperate and thought to myself that my mom had just pooped so much again and that it was all watery, and my tears flowed uncontrollably. I even thought for a second, “If I get a new crown, I can’t care about anything else. “
After a few days, the director came back. We were all desperate, the hormones were not working, what else could we do? My mom then said to the director, “Am I hopeless? “
The director reassured her, “Don’t worry, I’m here, I’ll help you see. You patients are just responsible for getting well, don’t think so much, leave the treatment to the doctor. “
Our whole family was moved to tears after hearing that. I had never heard a doctor say something like that before, and the moment the words fell, his image in my eyes became especially tall. The fact that the doctor could say that in a time of despair gave us a sense of faith and hope. We were desperate, but hearing his words made us feel like we could still hang on.
The director soon came over to talk to my mom about the next treatment plan, “The digestive tract problem is basically ruled out, we suspect that it may still be a kidney problem. “
It just so happened that we had been suspecting the same thing, so I told the doctor, “It’s almost time to replace mom’s ureteral stent, so why don’t we replace her tube first? The doctor agreed, and the surgery was scheduled immediately.
On the day after the replacement, a miracle happened unexpectedly! My mom had no more diarrhea, and I was so happy when I saw her formed stools again after a few months!
During that time, basically the whole department was tortured by us, and everyone knew about my mom’s condition, and they were very surprised and happy to hear that she had no more diarrhea.
The director later analyzed that there should be a fistula between mom’s ureter and small intestine, “because of this fistula, bacteria from the intestine will enter the urinary system, causing repeated infections in the ureter; and after the ureter is blocked with infection, all the urine will drain to the intestine, causing diarrhea; and still because of this fistula, the constant stimulation of the intestines by urine causes an increase in diarrhea that greatly exceeds the amount of water excreted by all normal people in a day. “
-7-
Happiness finally came to the family
After nearly 120 days of constant diarrhea, Mom was finally able to return to her long-lost home for a break. Everything in the house was as usual, but the family felt as if it was a lifetime ago, and she was as cautious as a scared bird in everything she did. Then, after another bout of edema and back pain, they decided to go to the hospital to solve the “fistula” problem once and for all.
On the day of the surgery, they were wheeled into the operating room at 13:00 in the afternoon and the surgery was not over until 23:00 at night. The doctor came out with a tray containing a small section of my mother’s small intestine, which indeed had a large “fistula” on it. The actual “fistula” is really a large “fistula” that I’ve never seen before, and it feels similar to the large intestines sold in the vegetable market.
The surgeon had been on his feet for hours, but after the surgery he personally took my mother to the ICU ward. By then he was too tired to drive himself home, and we later learned that the procedure was very complicated and we were really grateful to him.
The next day my mom came out of the ICU in pretty good shape. When I was at my mom’s bedside, I suddenly heard a voice floating behind me, “Yo, four bags of elders! I didn’t understand what it meant at first, but when I looked again, I found four drainage bags hanging by my mom’s bedside. The doctor who made the joke was the same one who performed the surgery yesterday, and he came into the room and kindly asked how my mom was feeling.
If you really count, the recovery period after surgery is long, but when I look back on it now, I think it was fast and furious, because unlike the daily despair and suffering during the diarrhea, my mother is getting better every day during the recovery period. From the beginning when she couldn’t eat anything but a little bit of porridge and water, she became unsatisfied and wanted to eat all kinds of things, and asked me for pickled fish by name. She was getting more and more appetite, which is a very good sign.
Slowly, Mom recovered in this way.
From October 2019 to April 2020, Xiao Jiang’s mom was finally discharged from the hospital. After this prolonged nightmare was finally over, Xiao Jiang wrote a long article to record this long and desperate hospitalization experience of his mom. In this episode, we can’t show all the hardships during this visit because of the limited space.
Xiao Jiang said that what she recorded was only the encounter of the patient and the family, which was influenced by the feelings and emotions of the time and was not completely objective. Different doctors have different styles and all give their judgment from a professional point of view, so the family is very grateful for the doctors who treated their mother.
At the end of the article, she writes
The time came on April 26th, the weather was hot and the epidemic was beginning to ease here. There was a light rain in the morning and the doctor came up to mom’s bedside and told us the latest test results and that it was time to leave the hospital. We smiled, thanked the doctor, and turned to hug Mom.
Happiness has finally come to this family ……
It is a very difficult thing to be born and seek medical help when you are sick, but to be cured is a blessing.
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