Post Date December, 03 2023
Hello everyone, I am an unknown person among many kidney disease patients.
For a long time, kidney disease has been extremely distorted and misunderstood by various advertisements and old concepts held by ordinary people, making many patients ashamed to mention that they have kidney disease. One can easily say, "I have high blood pressure, I have high blood lipids, I have gout, I have high blood sugar, I have..." But it's hard to say easily, I have kidney disease!
In fact, kidney disease is not uncommon! About 10% of the incidence rate can even be said to be very common. In the nine years since my illness in 2008, it has been a history of blood and tears between me and kidney disease, from fighting to peaceful coexistence. As the saying goes, "Long illness makes a doctor"! Now that I am also a senior patient, I hope that through my experience over the years, I can give some direction and experience to kidney friends who are at a loss in the dark.
This article is not just for nephrologists. I hope to be seen by more nephrologists with ideals.
1
Pessimistic voices around patients with kidney disease
In college, after a common cold, I developed strong tea colored urine. Later, after kidney puncture, I was diagnosed with IgA nephropathy.
At first, I didn't understand anything about my illness. "I remember when I was in the hospital for puncture, the attending doctor was too busy to see anyone every day. I only had to rely on my own online search for all my knowledge of kidney disease, or chat with kidney friends in the ward to learn from it.".
"Even when I later saw a doctor in an outpatient clinic, it was difficult to obtain some knowledge about the condition from the doctor. I always prescribed a checklist and medication, even if it was completed.".
In the subsequent treatment process, I took many detours, and I have to say that it has a lot to do with the fact that few doctors have popularized common sense, and the vast majority of cognition comes from the misinformation that Baidu, relatives, friends, and patients have heard, pieced together, and generalized.
At that time, a patient with uremia shook his head at me and sighed, "You got this disease so young, hey, my today is your tomorrow!"! With a look of regret.
Encountered the little nurse who gave me an infusion, she shook her head and sighed at me, saying, "Hey, young and young people get kidney disease!"! With a look of regret.
Encountered a relative, he shook his head at me and sighed, "Hey, how did you get this bad disease?"! With a look of regret.
Most kidney friends, when they first fell ill, heard the sounds around them all like this - hey, what a pity! What a pity! Pessimistic voices pervading around patients with kidney disease!
People who have been ill for a long time are not pessimistic when they hear these words! Even if the original condition is not serious, you can be frightened into weakening your legs. Quickly think of all ways to eliminate the indicators.
The problem is, many people don't really know much about the correct expertise in kidney disease. Listening to these people's unprofessional opinions not only does not provide good guidance for the disease, but also tends to lead to despair and fear of the disease, leading to misguided behavior.
After taking so many detours, it was only in recent years that I gradually deepened my understanding of kidney disease.
Kidney disease is not uncommon. There are 120 million people with chronic kidney disease in China, and the people we have detected are just the tip of the iceberg. Most people are kept in the dark because they have no symptoms or are not examined, and being able to detect it early is actually "lucky" among "misfortunes.".
Kidney disease in young people is not uncommon. Like IgA nephropathy, which I have, it is a common type of chronic kidney disease. The onset age is concentrated between 20-40 years old, and it is a very young disease.
There are many people who have a good prognosis for kidney disease, and there are many who will not have kidney failure for a lifetime. It is not like having kidney disease and dying! Even if a small number of people end up with renal failure, as well as dialysis and kidney transplantation, many dialysis and transplant patients can continue to study and work after their condition is stable.
The people around us don't understand, but they use their limited cognitive power to give us a seemingly pessimistic future.
2
"Compassed" by top experts
Due to the tremendous pressure on her condition, my mother went everywhere to seek medical advice. "When I heard that someone in my family has kidney disease and what prescriptions have been used, I quickly asked to have them tested for me.". "We don't know what these traditional Chinese medicine ingredients are. When we hear that others have" cured "symptoms, we go to see them. After eating them, we can have vomiting and diarrhea, and then change them.".
The extreme fear of kidney disease has led me to try many prescriptions! I'm really scared when I think about it now. I never thought that eating like this might damage my kidneys! I always thought it would be ineffective at best. How could it possibly be eaten bad? Later, I learned that in fact, many people suffer from kidney failure due to indiscriminate medication every year.
Moreover, in this treatment method, various indicators such as proteinuria, blood pressure, and creatinine that should have been regularly reviewed have never been continuously monitored, and no doctor has told me when to come back for a follow-up visit. Today, this doctor has changed over time, and seeing a doctor is like fighting a guerrilla. The treatment of chronic diseases in this way is of course not ideal. Without the doctor's advice, I am bent on seeking good and quick results, and I simply do not understand these principles.
Later, I came to Beijing for work reasons. When I first arrived, with the help of a friend, I managed to hang up at a famous traditional Chinese medicine hospital in Beijing and enjoy special national allowances. I was a veteran Chinese doctor with a bunch of titles before his name.
After seeing that my urine routine showed blood and urine protein levels of 3+, the old Chinese doctor showed a compassionate and difficult look.
The old Chinese doctor asked, "Have you ever had a good time with your urine routine?"
"I replied, 'Yes, after using Tripterygium wilfordii for 2 months, it basically turned negative!'"
The old Chinese doctor asked, "Ah, why didn't you insist on using it?"
"I replied, 'Isn't that going to affect fertility? My period is almost gone when I use it!'"
Old Chinese doctor: "Are you in this situation, talking about friends? It's difficult to have a child. Don't think about it. I'll give you a prescription and stick to it when you go back."
This traditional Chinese medicine recipe with tripterygium wilfordii was later torn to pieces by me after I left the door, and I vowed not to see doctors in disorder again. How about any number of titles? Some doctors never look at the diagnosis and treatment standards, and there are many people who treat diseases by feeling.
At that time, I already understood that Tripterygium wilfordii belongs to the immunosuppressant in traditional Chinese medicine, and the use of immunosuppressants should not be so hasty. After all, various side effects are still relatively obvious, and a doctor should know how to weigh the advantages and disadvantages of medication for patients. However, this old doctor's understanding of kidney disease still remains that eliminating the indicators quickly is the most correct, regardless of the side effects!
3
Standardized treatment, taking me out of the shadows
Western medicine's treatment guidelines have long provided clear instructions for IgA nephropathy: For patients with proteinuria greater than 1g, gradually add RAS blockers, and provide adequate blood pressure control until the patient's proteinuria is less than 1g. If not, or if the pathological activity is high, hormone therapy should be considered. The use of immunosuppressants is only necessary in special circumstances.
Patients with normal blood pressure, proteinuria below 0.5g, and stable creatinine have a significantly reduced risk of renal failure later! Protecting renal function is the ultimate goal of treatment, and it is not as simple as simply eliminating superficial indicators.
It was not until my fifth year of medical treatment that such norms were implemented on me, and my treatment was on track. Not only did I have a lovely child under the guidance of regular follow-up treatment, but my proteinuria, blood pressure, and renal function have also been very stable for nearly 4 years.
This is the test sheet that I reviewed two days ago. It gives some confidence to patients undergoing regular treatment, finds suitable regular follow-up doctors, and perseveres in the end, which is victory!
4
Nephropathy treatment disorder hopes to be standardized one day earlier
I once met a child with mild hematuria. The local hospital gave him hormone plus tripterygium wilfordii after a pile of traditional Chinese patent medicines and simple preparations such as nephritis recovery tablets, hematuria Anhuangkui capsules failed to work after repeated bombardment. The child's parents were not at ease, so they referred him to Beijing Children's Hospital. After the doctor ruled out hereditary nephritis and other reasons, they asked his child to have regular examinations for half a year, telling him that no medicine should be taken. Before that, the anxious mother had been treating her child with various drugs for nearly two years, spending tens of thousands of dollars.
Once upon a time, a kidney friend who was seeing a doctor with me never managed a large amount of proteinuria after taking a period of hormones. He thought it would be okay if the swelling disappeared, but in a few years he would have renal failure. "He always says that my life is good, but his life is not good. In fact, this is not a matter of whether his life is good or not. If he had been regularly reviewed and treated, not just based on his own symptoms, his kidney failure would never have come so quickly.".
How I hope that some mature and good treatment models and follow-up models can be promoted nationwide! Chronic disease is a long-term process, and the consultation process cannot be without rules and regulations! Where are the rules and regulations? When will it be fully implemented? I think this is the direction that every nephrologist with ideals can strive for, and it is also the voice of all our nephrologists!
