#健康夜话 #
"Well, Jiajia, you must come on!" There is still a lot of beauty waiting for you! In the previous 34 years, I have not been defeated, and in the future, you will be the same! ”
In the WeChat circle of friends, after recording a paragraph of cheering myself up, I sent out the birthday photos of our family of three last year. At the time, each of us had a happy smile on our faces, and no one thought that a rare kidney disease was preparing to sneak up on us.
01
My name is Jiajia, I am 34 years old and I am the mother of a 5-year-old child. My husband and I run a small tea shop in Changde, Hunan. The city is not big, people are not small, usually the store ushered in the delivery, but also enough for our small two busy.
The story begins in September 2020. I remember that the business in the store was good in those days, and I was a little tired myself, and when I went to the toilet, I found that the urine was strong brown. I've always boasted in front of my friends that I'm in good health and rarely have a cold, but this time, I decided to go to the hospital to check it out.
I went to a nearby hospital to have my urine tested, and the doctor said it might be a urinary tract infection, and told me to take levofloxacin for a few days and then look at it. I have a lot of peace of mind, urinary tract infection, I made it last year, a few days will be fine, not a thing. But a few days passed, and the situation was not good. The color of the urine deepened, the amount of urine decreased significantly, and my whole body was puffy and I became thoughtless and listless.
02
On September 17, 2020, I went to a big hospital. The attending doctor drew blood to check the renal function, showing a serum creatinine of 265 mmol/L, and the results of the color ultrasound examination showed "diffuse lesions of the parenchyma of both kidneys".
I grinned and asked the doctor, "What's wrong?" Seriously? Need to be hospitalized? The doctor looked very solemn, said that it was estimated to be acute kidney failure, and recommended going to the higher hospital, and as soon as possible. She also advised that we should not take it lightly. Oh my God, I can eat and sleep, I haven't done anything, how can I have kidney failure?!
I fully trusted the doctor's judgment and hurried to Changsha and came to the Department of Nephrology of Hunan Provincial People's Hospital. It was late at night on September 17, and I had been working hard for a day, and there was still no urine, and the serum creatinine was 593 mmol/L that night. I remember that the autumn tigers in Changsha are really powerful, and the heat outside has not subsided, but my heart is cold: I am only 33 years old, I want to assist the old public good shop, I promised my daughter to take her out to play, and also planned to have a second child... There are still many things waiting for me to do.
03
The next morning it was Dr. Rosen who checked the room. He spoke softly and asked very carefully. After asking, he quickly arranged for the nurse to draw a few more tubes of blood, and then talked with my husband out of the ward for a while.
My husband came back in tears. I quickly quipped with him: "I'm afraid it will cost a lot of money, so don't be reluctant!" ”
Dr. Luo came back to comfort us a few words, saying that the current situation is a bit urgent, it may be a rare disease, it is estimated to do blood purification, "you don't think too much, according to the arrangements of doctors and nurses."
Hemodialysis begins in the morning. Two hours passed, and the results of the blood draw returned: positive for anti-GBM antibodies. Anti-GBM disease? What is this disease? I quietly searched, this is a rare disease, the incidence of 0.5 to 1.6 cases / million people / year, will affect the kidneys and lungs, and I am the most serious type, causing acute kidney failure, at any time there is a possibility of pulmonary hemorrhage.
As for the ending, there are only four cold words: the prognosis is extremely poor. If you don't seize the opportunity to treat, you may lose your life... Alas, how did this disease, which I had never heard of, be put on my stall?
04
I consoled myself that I wasn't the unluckiest person, and even if I had to go to the hospital 3 times a week for dialysis, I could take care of myself. I asked the patients of long-term dialysis in the neighboring bed, and now the state reimburses a lot, which will not bring too much burden to the family. Don't dwell on it, don't complain.
I signed off on plasma exchange at the first time. Dr. Luo said that Corey organized an urgent discussion, which is an autoimmune disease, to clean up the plasma containing the diseased substance in my body, and to replenish the normal plasma; plasma is a valuable medical resource, donated by unpaid blood donors, fortunately, I am small, and the amount needed is not so large. Hey, I've always felt that I'm not satisfied with my small size, but I didn't expect it to be an advantage now.
In fact, plasma exchange is not smooth at all. Before I could finish the first time, I had a rash all over my body and was so itchy that I was tickled. I don't know how I survived. "Come on Jiajia! You can get through it. "I said this to myself in my heart.
I did it for 3 days in a row, replaced 9,000 ml of plasma, which was equivalent to changing the plasma in my body several times, and also underwent hormone shock treatment, but I still did not urinate, vomited all day, could not breathe, and could not sleep at all. Dr. Luo said that there was too much water and toxins in my body, too much heart load, heart failure attacks, in addition to plasma replacement, I had to do 8 hours of hemodialysis every day... When is such a treatment a head?
05
Seeing that the serum creatinine had reached more than 700 mmol/L, I was afraid that my condition was going to develop to uremia. Woohoo... My parents are a daughter of mine, I have always been obedient, after graduating from college to find a good husband, my daughter is also very well-behaved, my mother lives with me... They are all my loved ones, my body is broken, what do they do?
Dr. Luo said to me, "You have acute kidney failure, not uremia... Thinking too much will only increase the psychological burden. You remember, sickness comes like a mountain, and illness goes like a thread. Now the possibility of your kidneys recovering is still there. Leave the matter of treatment to the doctor, and adjust your mindset to your own. ”
This gave me the courage to continue the treatment. I started figuring out the parts I could control, like recipes. Under the guidance of the dietitian and nurse sisters, I recorded my daily water and urine intake in detail, and found more things for myself to do, so that I would not think wildly. By day 10, after 7 plasma exchanges, my urine began to increase, I could lie flat at night, I walked smoothly, I also had an appetite, my blood creatinine was reviewed to more than 400 mmol/L, and gbM antibodies continued to be negative. Dr. Luo said that the antibody is eliminated, and it is estimated that it will be able to get rid of dialysis in the future.
Today, it has been 1 year and 3 months since the onset of the disease. I regularly went to Dr. Luo's outpatient clinic, started to go once a month, and now go once every 3 months, hormones and cyclophosphamide have been stopped, the urine test is basically normal, the blood creatinine has dropped to 125 mmol/L, and there are no more obvious complications.
How to say it, God made a big joke for me to get a disease that was lower than the probability of winning the jackpot, but modern medicine and medical staff saved my kidneys and life.
Doctor reviews
It is difficult for doctors to have a deep understanding of a patient's mindset. Thanks to Jiajia, she showed us her delicate inner world. More than a year has passed, summing up Jiajia's condition, there are only 3 words: not easy. Anti-GBM disease is anti-glomerular basement membrane disease, sudden onset, multi-organ involvement, destructive blow to the kidneys, causing large hemoptysis may also be fatal.
Fortunately, Jiajia's medical treatment is not too late, the treatment is active and in place, and the effect is satisfactory. Among them, the patient's tenacious spirit, the support of many families, the good communication between doctors and patients, and the experience of diagnosis and treatment in the department are indispensable. I hope that patients will pay attention to kidney health, and doctors will identify diseases early so that the damage of pain can be reduced as much as possible.
Author: Jiajia
Comments: Luo Xun, chief physician of the Department of Nephrology, Hunan Provincial People's Hospital
Planner: Tan Jia Yu Yunxi
Anchor: Liang Jing
Editor: Yu Yunxi