※This is Puchiko’s experience and isn’t a substitute for diagnosis or treatment.
In the previous article, I discussed Puchiko’s two years of wasted treatment and her decision to transfer hospitals.
This piece details the truth of how we found a trustworthy specialist—the search for expert care—and the candid account of what I told Puchiko when she was in utter despair.
Part1 is here.
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https://recordbygeorgecrouch.com/the-importance-of-choosing-your-nephrologist-wisely-part-1/
Table of Contents
7. IgA Nephropathy Treatment in Japan
Since I’m writing in English, I assume many non-Japanese readers are reading this. In fact, IgA Nephropathy is said to be common in Japanese people. The reason isn’t yet known, and Puchiko is currently cooperating with research by providing her genetic samples to the university hospital she now attends.
When Puchiko decided to transfer hospitals, she contacted the IgA Nephropathy Radical Treatment Network founded by Dr. Hotta, an authority on IgA Nephropathy treatment in Japan. She sought information and asked them to recommend hospitals near her with experience in treating the disease. Depending on the region, specialized treatment for IgA Nephropathy might not be available, and it seems Dr. Hotta’s hospital (in Sendai, Miyagi Prefecture) sometimes treats patients from other prefectures. She secretly wished Dr. Hotta could treat her directly, but they suggested a nearby medical institution with a proven track record.
If you transfer hospitals without a referral, you’ll incur an extra fee for the first visit. However, Puchiko decided she wouldn’t skimp on money anymore, having brought about the worst results by trying to save on transportation costs before. She wanted to tell the old nephrologist, “I don’t trust you, so I’m transferring. Write the referral quickly,” but she didn’t. Instead, she skipped her next scheduled appointment and quietly went to the hospital Dr. Hotta recommended. During her first visit there, her new attending physician couldn’t understand the previous doctor’s prescription, saying, “Are you taking this medicine? Why? You don’t need it! It’s completely unrelated to this disease.”
It was at the new hospital that Puchiko had a kidney biopsy, received steroid pulse therapy, and achieved remission. (We’ll talk about that later.)
8. My Observations as Her Close Companion
Puchiko was in a mode of despair back then, told by her doctor that her urine blood “won’t disappear now” after two years of treatment. Her mood immediately turned pessimistic, and she was irritable, speaking like a knife with too sharp an edge. In that state, she wasn’t proactively researching her illness.
It was rare for me, but I told her: “Are you going to accept being given up on by that quack doctor who can’t empathize with patients and speaks like a boor? Aren’t you frustrated? Cure what he said wouldn’t be cured, and one day, tell him, ‘Leaving your care was the right decision.’ (She didn’t actually go and say it.)” I said this because, at the time, she was covering her ears against well-meaning encouragement from others, and I didn’t want to hurt her with any extra comments. But I had witnessed everything, and I said it because I believed she’d remain in despair otherwise. It was an all-or-nothing gamble, and I’m glad it succeeded.
Message
Don’t compare yourself to others. That’s important. Also, don’t hesitate to ask your doctor questions about your treatment. Puchiko’s shift to a doctor she felt comfortable asking questions of completely changed her attitude toward treatment for the better. You don’t have to force yourself to be positive, but please don’t despair. I’m rooting for you!