※This is Puchiko’s experience and isn’t a substitute for diagnosis or treatment.
What You’ll Learn from Puchiko’s Experience: 1. Why Kidney Biopsy capability is more important than star ratings. 2. How to assess a doctor’s attitude and trustworthiness. 3. The danger of trying to save on transportation costs for long-term care.
Choosing a nephrologist is a crucial point in the treatment of IgA Nephropathy and other kidney diseases. I still regret that Puchiko’s initial choice led to wasted time and the deterioration of her kidney function, even now that she’s in remission.
Here are the key lessons learned from her experience and important points to consider when selecting a clinic.
Puchiko’s Mistake: The Danger of Choosing by Rating and Proximity Alone
When Puchiko had an abnormal urine test result and decided to see a nephrologist, she relied on Google ratings and chose a nearby clinic with five stars.
Without performing a detailed examination like a kidney biopsy, the doctor diagnosed suspected IgA Nephropathy based solely on his “40 years of experience at a university hospital.” That’s the worst compass for life. The treatment consisted only of tonsillectomy (which is understandable) and medication unrelated to IgA Nephropathy. When her condition didn’t improve, he eventually gave up on her, saying, “Your urine blood won’t disappear now.”
She didn’t just spend two years wasting time and money on meaningless treatment; her e-GFR continued to worsen during that period.
By the way, Puchiko actually did a re-examination at a nearby general clinic before going to that specialist. She was trying to save on transportation costs. By saving a few hundred yen, she wasted about a month of time. I wonder how much she wasted in terms of hourly wage? The result of that re-examination was, “Yes, you have protein and blood in your urine, but since it’s not cancer, there’s no abnormality.” While not having cancer was good, Puchiko felt a vague sense of dissatisfaction. Although she was a complete amateur, she wanted to scream, “That can’t be okay!” but she swallowed her words since she’d neglected it for years. That’s why she went to the specialist mentioned above.
Key Points for Choosing a Nephrologist
Table of Contents
1. Confirm Expertise and Experience
Kidney disease treatment requires specialized knowledge and the latest guidelines. Choose a hospital that can perform detailed examinations, including a kidney biopsy. University hospitals or facilities with kidney specialists are ideal. However, the five-star clinic Puchiko went to also had a kidney specialist…
Google reviews with a five-star rating don’t guarantee safety. When Puchiko and I checked, that clinic had five stars. That’s the same perspective as a person in power who only looks at numbers. We deeply felt at that time that it’s better to reserve looking at the number of stars for the sky only.
In any case, if your urine test is abnormal, get re-examined at a urology or nephrology clinic instead of just checking with a nearby general practitioner, as she did initially.
2. Does the Doctor Offer the Latest Treatments?
Treatments for IgA Nephropathy and other kidney diseases are constantly evolving. Ask the hospital or doctor directly if the treatment is based on the latest research and guidelines.
It was around the time Puchiko started reading the guidelines that she gained enough knowledge to start questioning her own treatment, which she’d been leaving entirely up to the previous nephrologist: “Is this really the right path?”
3. Compatibility with Your Doctor is Also Important
Since kidney disease treatment is often long-term, reliable communication with your doctor is essential. Check if their explanations are easy to understand and if they carefully answer your questions.
The first nephrologist was good at explaining the mechanism of IgA Nephropathy. However, he didn’t patiently answer Puchiko’s questions. When she asked something, he’d wear a look of annoyance, as if she had just breathed a hot sigh in his ear in the middle of summer.
As I mentioned, the first nephrologist Puchiko consulted was confident in his “40 years of experience at a university hospital.” That was his only pride.
When Puchiko expressed her anxiety about taking time off work for a tonsillectomy—being a non-regular employee—the doctor frowned, looked incredibly bothered, and snapped back with hurried acknowledgements like “Huh?” and “So?” He dismissively told her, “Don’t worry about such minor things. If I write the diagnosis, they won’t complain.” I wanted to scream, “They won’t complain about the surgery, but what if she permanently loses her seat at work? Doesn’t he understand the patient’s feelings?” It was clear expressing her anxiety to him was strictly forbidden.
Watching that, my blood boiled. I shouted all sorts of insults at that doctor right then and there. It wasn’t a problem; I’m her imaginary friend, and only people with a pure heart can hear my voice.
Also, at the time, Puchiko was sometimes in a position to counsel dialysis patients for her job. She found it unbearable, feeling she was looking at her future self. When she told the doctor this, he said, “You won’t need dialysis for another 10 to 20 years, so you’ll be fine.” She thought, “Ah, this doctor assumes I’ll become a dialysis patient. He doesn’t intend to lead me to remission before that. Or is it that he makes more money if I become a dialysis patient? I bet it is.”
She should’ve decided to change hospitals at that point, but she continued going out of inertia, like a person who can’t break up with a terrible boyfriend. While discussing her anxieties and worries with this doctor was useless, she still had questions about things like the general duration of her hospitalization and treatment.
Furthermore, this doctor kept changing his prognosis. “It’ll turn negative in six months,” then “It’ll be negative in a year,” and finally, “Your urine blood won’t disappear now.” After two years of visits, her kidney function (e-GFR) dropped from 100 to 60, with no improvement. Finally, Puchiko told me, “I don’t want to go to this doctor anymore.” She concluded that building trust with him was impossible due to his arrogant attitude. She transferred hospitals to protect her own body.
(Also, once, when this doctor made a prescription error, a pharmacist called to confirm, and he yelled, “There’s no way I made a mistake!” At the next appointment, he complained to Puchiko, “That pharmacist is useless. They’re no good.” That turned me off. I thought, This guy’s impossible.)
4. Ease of Access is Important for Continuing Treatment
When treatment is long-term, consider the convenience of commuting. However, don’t choose based solely on proximity; balance it with other factors. Puchiko’s decision to choose a place “just three or four train stops away” was her second mistake—she was again saving on transportation costs. While it’s understandable to want a nearby clinic, especially given the long waiting times, if you can tolerate an hour, you should widen your search for a better medical institution.
The most important thing, however, is trust in the treatment and the doctor. (Also, hospital food… when Puchiko was hospitalized for her tonsillectomy, the food was so bad she went on a hunger strike and had to meet with the doctor and dietitian. I consider that a hunger strike.) While a three-hour commute from home is certainly a hardship, true ease of access is less about distance and more about trust. Let’s say the distance of the heart is more important. That’s a good point I just made.
5. Referencing Patient Voices
Besides online ratings, it’s important to research patient feedback on treatment. Use patient associations, social media (SNS), and review sites to gather actual experiences. You can compare them with the treatment you’re receiving. Treatment plans vary according to individual symptoms and test results, but if anything concerns you when comparing, you should feel free to ask your doctor. Isn’t that trusting relationship—being able to ask questions freely—what’s crucial for treatment? After all, you’re undergoing treatment for yourself, not for the doctor, and you’re not paying money for the doctor’s sake. You want to receive treatment with conviction, right?
Instagram is full of information on what treatments and diets other patients are using. Beyond just collecting information, having peers is a huge emotional support, especially for a rare disease.
6. Lessons Learned in Choosing a Nephrologist
In Puchiko’s case, the two years of wasted treatment resulted in reduced kidney function. Her e-GFR was already quite low when she finally changed hospitals. During that time, she became very depressed and even considered giving up on treatment. Because the doctor told her, “Your urine blood won’t disappear now,” she felt, “What’s the point of trying?”
If she’d chosen the right nephrologist from the beginning, she could’ve received the correct treatment much earlier. Early detection and appropriate treatment are key to kidney disease, so choose your medical institution carefully for re-examination.