Record by George Crouch

Tag: Kidney

  • 【Steroid Pulse Therapy IgA Nephropathy】Dealing with Moon Face, Mood Swings, and the Adrenal Glands on Hiatus

    ※This is Puchiko’s experience and isn’t a substitute for diagnosis or treatment.

    I imagine some of you might be wondering, “What on earth is a ‘Steroid Pulse’?” when the term suddenly appears. I, too, hear the word “steroid” often enough that it feels familiar (from steroid-containing ointments, etc.), but when Puchiko was researching IgA Nephropathy treatment, I wondered, “What exactly is a Steroid Pulse?” Based on what I’ve witnessed through Puchiko’s experience, I will explain why this treatment is administered for IgA Nephropathy.

    1. Why Do We Use Steroid Pulse?

    The reason for using steroids is their powerful ability to suppress inflammation caused by the immune response. In IgA Nephropathy, the body’s immune system overreacts, causing inflammation in the kidney’s glomeruli (the part that filters the blood). If this inflammation persists, kidney function gradually declines, risking progression to renal failure in the future. Steroids suppress immune function and quell inflammation, offering expected benefits such as:

    • Improving hematuria and proteinuria.

    • Preventing the deterioration of kidney function.

    Steroid pulse therapy, in particular, aims to rapidly suppress inflammation by administering a high concentration of steroids over a short period, minimizing damage to the kidneys. Steroids are used not only for IgA Nephropathy but also for various other kidney diseases (like nephrotic syndrome), cancer treatments, and collagen diseases.

    However, steroids have a mischievous personality, causing side effects. Thus, they must be used appropriately under a doctor’s guidance. I will discuss the side effects Puchiko experienced later in “4. About Side Effects.”

    2. Treatment Details

    Steroid pulse therapy involves the intravenous administration of a high-concentration steroid (methylprednisolone). It is typically administered for three consecutive days to rapidly quell the inflammation in the body. Since blood sugar levels rise during steroid treatment, whether administered intravenously or orally, blood sugar is measured after every meal during hospitalization. If the reading exceeds 200, insulin is administered.

    3. Number of Treatments

    Usually, a steroid pulse consists of one 3-day set, or one course. Based on the doctor’s judgment, Puchiko received three courses of treatment:

    3 days of IV drip (1st course) \rightarrow 3 days of oral medication \rightarrow 4 days of IV drip (2nd course) [Up to this point was during hospitalization] \rightarrow 3 days of oral medication \rightarrow 3 days of IV drip (3rd course) \rightarrow 1 year of oral medication with gradually reduced dosage.

    The reason for taking oral medication with a reduced dosage for a year is that the massive dose of steroids causes the adrenal glands—which normally produce the steroid substance cortisol—to go on hiatus.

    Therefore, abruptly stopping the medication can upset the body’s balance, leading not only to nausea and headaches but also to dangerous symptoms. You should always inform your dentist, for instance, about your steroid treatment and show them your medication record book. The same goes for any surgery where your body will be under stress.

    4. About Side Effects

    While steroid pulse therapy is effective, Puchiko also experienced the mischievous steroid’s side effects. Here are the specifics:

    ⑴ Face Swelling (Moon Face)

    Moon face is worrisome, isn’t it? Whether people know about your illness or not, you don’t want them to comment on it, and you certainly don’t want rumors like “They gained weight” or “They look swollen.” It’s stressful to have this visible side effect when you’re already concerned about people saying unnecessary things.

    The conclusion regarding Moon Face is that Puchiko was one of the people who didn’t experience it severely. She herself felt like, “Ah, my cheeks got bigger,” but others didn’t notice it. This wasn’t because people were being considerate; it was genuinely minor. Puchiko’s mother only commented, “Ah, you look a bit plumper.” However, when Puchiko’s grandmother—who didn’t know about the illness—saw her after a long time, she said, “Look at the flesh on your shoulders! You’ve gained weight.” (Puchiko was later fed up with these kinds of conversations and told me, “I want to go home.”)

    George’s TIPs for Steroid Pulse

    Compared to others (those who share photos online), Puchiko didn’t experience Moon Face severely. While it’s hard to prevent completely, Puchiko—due to her kidney disease—requested nutritional guidance during her hospitalization. She told the registered dietitian she wanted a diet that would prevent blood sugar spikes while taking Prednisone (oral steroid) but not cause weight loss (because losing weight would lead to stricter protein and salt restrictions). She was taught calorie counting, timing her meals, and avoiding snacks. (Though she had been managing her diet, she wanted to specifically avoid blood sugar spikes and Moon Face.) Her strict avoidance of snacks might have contributed slightly. During steroid treatment, the appetite can surge to a point where you feel like you could eat everything, so you must endure the temptation to overeat.

    ⑵ Emotional Instability

    Steroids can cause emotional instability. Puchiko experienced sudden irritation and increased tearfulness, making support and understanding from family and others crucial. Other people’s casual comments, encouragement, and even social media—things that don’t bother you when you’re healthy—can become toxic when you’re on steroids.

    For example, this happened during her steroid pulse hospitalization: the amount of proteinuria wasn’t small enough to be cured by steroids alone. That was the context when Puchiko, who rarely cries, burst into uncontrollable tears during her steroid pulse treatment. I mention this to let others know they are not alone.

    Especially important: have you had past experiences—even when you were well—where someone said something like, “Why would you say that?” If people have hurt you with their words in the past, do not go near them now. They might not have malicious intent, but if their words hurt you, it’s best to keep your distance. If they are subconsciously doing it, it’s even more troublesome. Maintain physical distance. Exchange greetings if necessary, but avoid meeting them or interacting beyond that. The same applies to the workplace. Heartless people exist. Limit interactions to greetings, and if they try to strike up a conversation, naturally escape—pretend to be busy. That’s how Puchiko protected her mind.

    Also, avoid checking other people’s social media. She set those accounts to be hidden because she found herself comparing her situation to theirs unnecessarily. She also turned off comments on her own posts, as she didn’t want unnecessary comments and was too tired to pretend to be cheerful.

    George’s TIPs for Steroid Pulse

    The reason you feel down during steroid treatment is that the steroids affect the hypothalamus. There is a physiological reason for it. If you feel depressed, inform your doctor; they can sometimes prescribe medication for mental health support. Also, walking for 15–30 minutes within two hours of waking up promotes serotonin secretion, which is good for mental health.

    ⑶ Insomnia

    This was a constant issue during hospitalization. On the first day of the steroid pulse, she even had a phantom smell of baked sweet potatoes while sleeping. She was prescribed a low-dependency sleeping pill called Dayvigo during her stay, but she still couldn’t sleep. This was likely less due to the steroids and more due to various factors in the large shared room. A woman next to her (who had nephrotic syndrome) during the kidney biopsy hospitalization was constantly complaining of sleepiness during her steroid pulse. So, it varies by person. Puchiko continued taking Dayvigo after discharge while the Prednisone dosage was still high. As the amount of Prednisone decreased, she was finally able to sleep better.

    George’s TIPs for Steroid Pulse

    Don’t forget earplugs and an eye mask when you are hospitalized in a shared room for the steroid pulse!

    ⑷ Bone Density

    Other comrades with the same illness were prescribed medication for bone density during steroid treatment. Puchiko was not, but her bone density still decreased.

    ⑸ Increased Susceptibility to Infection

    Puchiko did her research before the steroid pulse hospitalization. She stumbled upon an old paper about a woman in her 50s who died from an infection during IgA Nephropathy steroid pulse treatment about 20 years ago. This made her extremely anxious, but she also sometimes remembers how frustrating it must have been for that woman, which strengthens her resolve to be vigilant about infection control.

    For several months after discharge, Puchiko was prescribed Difen Compound Tablets (for the treatment and prevention of Pneumocystis Pneumonia). Prednisone is already confusing, with rules about taking it after lunch, or every other day, but the Difen Compound Tablets were prescribed only for Mondays and Thursdays.

    She always wears a mask when going out (even now that she is in remission)—while commuting and at work. If you catch a cold and get a fever, there’s a risk of a relapse, especially if you are currently taking an immunosuppressant like Prednisone. Puchiko asks friends who know her situation to wear a mask and cancels meetings if they show cold symptoms. (Some people who knew her situation still said things like, “Are you still wearing a mask?” I judged that Puchiko’s health meant so little to this person that I told her to stop associating with them. I wanted to punch them myself.)

    She also performs another daily infection prevention ritual: nasal rinsing.

    ⑹ Happy Side Effect

    With so many negatives, you might feel reluctant to undergo steroid pulse therapy. I understand. Amidst all that, there was one side effect that felt like a “lucky break.” Puchiko has allergies to cedar, ragweed, rice, and cypress pollen. Thanks to the anti-inflammatory effects of the steroid, her allergic reactions were minimal during the treatment. (She still needed medication when pollen levels were very high.) Even after the steroid treatment ended, perhaps due to continued nasal rinsing and mask-wearing, she hasn’t caught a cold or suffered from hay fever. She used to have chronic symptoms so severe that Alegra was ineffective (and she eventually switched to an Australian nasal spray because the prescription drugs were too much hassle). Now, she rarely needs medication—perhaps one capsule a year.

    5. Post-Treatment Course and Experience

    Regarding her post-treatment course, her kidney function value (e-GFR) has fluctuated between 65 and 79—during the tonsillectomy, steroid treatment, and even now in remission.

    All side effects gradually diminished as the Prednisone dosage was reduced; the Moon Face and the depressive feelings disappeared before she even noticed.

    Crucially, the microscopic hematuria and proteinuria slowly decreased. Since Puchiko had a much higher level of proteinuria than others, she also used a medication called Losartan K to reduce it. Although she is said to be in remission, her proteinuria sometimes registers as trace (±). During the steroid treatment, it took months for the hematuria and proteinuria to decrease, which was discouraging, but they did slowly drop.

    6. Summary

    Steroid pulse therapy for IgA Nephropathy is an effective treatment, but managing the side effects is also crucial. I hope Puchiko’s own experience will serve as a reference for those about to undergo the treatment.

  • 【Tonsillectomy IgA Nephropathy】Real Talk on Recovery, Pain, and What Not to Eat

    ※This is Puchiko’s experience and isn’t a substitute for diagnosis or treatment.

    When I thought of a tonsillectomy, my image of it was immediately associated with pain. Of course, I haven’t personally experienced a tonsillectomy or the pain that comes with it. However, I was there to witness Puchiko undergoing the procedure and experiencing the recovery pain, and I would like to share my perspective on that time with you all.

    1. Why Do They Do Tonsillectomy?

    It’s a mystery: the protagonist is the kidney, yet they take out the tonsils… For those of us living with the disease, we understand it. But when you tell a colleague or acquaintance, “I’m having my tonsils out because of a kidney disease,” I’m sure Puchiko and I aren’t the only ones who get a puzzled look and feel too lazy to explain it. Even if I carefully explained, “The cause of IgA Nephropathy is often a focal infection far from the kidneys, such as tonsillitis, chronic nasopharyngitis, or periapical periodontitis, so we remove the tonsils,” they’d likely just say, “Huh? Doesn’t make sense.” That’s too much hassle.

    This is how I explain like a this Puchiko’s illustration.

    2. Pre-Surgery Preparation, Flow, and General Details

    For the hospital stay, unlike the kidney biopsy, there’s no strict bed rest or no-shower rule, so you don’t need dry shampoo. The most essential item you do need? Tissues, towels, and anything you can spit saliva into! One box of tissues is a ridiculously inadequate amount. Saliva continuously overflows, so much so that I wondered if Puchiko had dehydrated herself by constantly spitting.

    3. About the Surgery

    Now, about the tonsillectomy itself: on the day of the surgery, Puchiko fasted and was given oral rehydration solution. In her case, she didn’t have a urinary catheter, but some people do, so individual differences exist.

    Puchiko walked to the operating room herself. She sat on the operating table and held out her arm to have a needle inserted—but they tried to insert it into the back of her hand instead. The needle failed to go in the first time, and after being poked repeatedly, she took off the oxygen mask she was wearing and angrily said, “That hurts!” I told her, “Puchiko! Endure it!”

    Once under general anesthesia, Puchiko dreamed. As her imaginary friend, I was able to experience the dream too, so I stayed in her dream while waiting for her surgery to end. It was a dream about a Pokémon, Gyarados. Since the surgery lasted about two hours, she was woken up mid-dream with, “It’s over now,” and experienced a moment of weightlessness while being transferred to her bed. At that point, she was still groggy and not in pain.

    As for Puchiko’s tonsils: before the surgery, we asked the surgeon if her family could take pictures, and her mother did. Looking at the post-op tonsil area, it was whitish. Puchiko was told her tonsils were in the second state out of three stages. The second stage meant they were quite enlarged, and the holes were rather uneven and bumpy. That makes sense, as she used to be able to clear tonsil stones herself, although that’s something you definitely shouldn’t do.

    4. Post-Operative Course

    She looked comfortable while wearing the oxygen mask after being transferred back to the bed. I assume this was because the anesthesia was still working. After the anesthesia wore off and the oxygen mask came off, Puchiko realized the pain, and that’s where the “hell” began. Ah, maybe I shouldn’t use the word ‘hell,’ but that’s how Puchiko described it at the time. I’ll cover the pain in detail later; here, let’s focus on the recovery process.

    She had a low-grade fever post-op. On the second day, her uvula was swollen. She wanted to be discharged quickly, so she asked the doctor what determined the discharge timing. He told her it was when the scabs were firmly in place, the wound was closed, and there was no bleeding.

    However, for some reason, they served her crackers (senbei) with her meal. She ate it because it was served, which caused a tear and bleeding, and the doctor got angry at her. When she complained to a more senior visiting doctor, saying, “I ate it because it was served… please don’t serve food we can’t eat,” I remember the doctor saying, “That’s a valid point.” I agreed.

    In any case, Puchiko was desperate to be discharged quickly. That’s because the hospital she stayed at for the tonsillectomy served food that was so unappetizing that when she went on a hunger strike, she was scolded. Incidentally, they gave her kiwi fruit, and when she ate it, she felt a pain so intense it hurt the back of her ears and her head. That might have been the most painful moment.

    If you want to be discharged quickly, be sure not to injure the surgical site like Puchiko did! Keeping the area from drying out is also important.

    5. About the Pain

    I used the threatening phrase “where the hell began” earlier, and here, “pain” accounts for most of that hell. However, when I asked Puchiko, she rated the pain level as 2.5 out of 5. …But the constant overflowing saliva was also quite tough. It hurts too much to swallow the saliva, which is why you end up having to spit it out like a spitting lion (Merlion).

    During the post-op period when she felt that pain, she was reading blogs and Instagram posts by other tonsillectomy patients, desperately searching for answers. What she wanted to know was: “Which day does it start getting easier?”

    Now, let’s go into detail about the pain Puchiko experienced.

    1) Immediate Post-Op Pain

    As mentioned, the pain immediately after surgery was minimal. I was truly impressed by the power of general anesthesia. Even though I knew it was thanks to the anesthesia, Puchiko thought, “This is easy!” The pain level was about 1 on a 5-point scale. So, at this point, the pain was nothing for Puchiko to be scared of. To make it clearer, it was about the level of pain when tonsillitis is just starting: “Oh, my throat hurts a bit. I wonder if it’s going to swell up later…”

    2) Pain During Eating and Drinking

    The pain hits precisely at the moment of swallowing. The first meal starts with soft rice porridge, but it wasn’t tasty. Puchiko already had kidney disease-related dietary restrictions, so she didn’t have much freedom, but if you don’t have such restrictions and can buy food from the convenience store, I recommend jelly and ice cream. Since you know the pain that comes with swallowing, your appetite might decrease, but please eat well and get nutrition to help the scabs form quickly over the tonsil site. And whatever you do, do not eat crackers or cookies, even if they are served, unlike Puchiko!

    3) Night Pain and Countermeasures

    When Puchiko had her tonsillectomy, she slept with her mouth open without using nasal strips (though she was wearing a mask during this hospital stay…). Other tonsillectomy patients also said that waking up was painful. I recommend you avoid sleeping with mouth breathing to alleviate the pain even slightly. This is also something you should continue doing long-term, as mouth breathing is linked to IgA Nephropathy. Nasal strips are highly recommended! Puchiko has tried various types, but for times when she absolutely doesn’t want to mouth breathe (like sleeping on a plane or when feeling sick), she uses this specific tape that can be easily torn by hand. Some people also brought humidifying masks containing menthol. I don’t know if they sell them overseas, but a mentholated, humidifying mask helps.

    4) Effectiveness of Painkillers

    As is common for kidney disease patients, she couldn’t use Loxonin, so Puchiko was prescribed Calonal (acetaminophen). The frequency was strictly controlled; in her case, it was limited to four times a day. This means you can’t just take it whenever you feel pain. Since meals were agonizing, she took it before eating. Calonal can be taken on an empty stomach, so pre-meal was fine. This meant three out of four doses were reserved for before meals. So, when was the last dose? She took it before sleeping. It’s impossible to sleep with the pain. It takes about 15 minutes to kick in, so she timed the intake carefully.

    6. Message

    To describe the pain: Puchiko said it was basically two or three times the pain of a swollen tonsil. I think “intense” is the right word for it. To her, the pain from the tattoo removal laser and the urinary catheter was worse.

    You’re probably thinking, “It hurts, and when will I be free from this pain?” Puchiko felt the same way. For her, the most agonizing pain was the morning after the surgery. She was so irritable that I was almost kicked. By the third day, the pain was perhaps minus 1/20th—it had slightly decreased. But the pain during meals lingered.

    If the hospitalization had been for the tonsillectomy alone (not combined with steroid pulse therapy), she would have still been in pain on the day of discharge (which was an 8-day stay for her), and even three days after discharge. She returned to work immediately after being discharged but remembers feeling pain during lunch. However, a week after discharge, it became much, much easier.

    Now, she is freed from that miserable pain of having swollen tonsils when she catches a cold. And since people who have tonsils often accumulate pus plugs (tonsil stones), she is now free of them and has clean breath. Think of this pain as borrowing a bit of misery now to pay it back later. The pain gradually, very gradually, decreases day by day. I know you are full of anxiety, but I hope this article will encourage you. We wholeheartedly support you!

  • 【Kidney Biopsy Experience】The Necessity of Data-Driven Treatment for IgA Nephropathy

    ※This is Puchiko’s experience and isn’t a substitute for diagnosis or treatment.

    I think I’ll take the liberty of explaining the kidney biopsy that Puchiko underwent, based on what I witnessed. What images come to your mind when you hear the term Kidney Biopsy? I made sure to observe Puchiko’s procedure closely. I know that those who actually have to undergo a kidney biopsy must feel anxious. I’d like to share Puchiko’s firsthand experience with the procedure.

    1. Who Needs a Kidney Biopsy?

    What is a kidney biopsy? If I just told you to refer to the many chronic kidney disease survivors who write about this elsewhere, you’d think I was lazy. So, let’s be thorough.

    First, let’s talk about the select few who undergo a kidney biopsy. Since Puchiko lives in Japan, I will share the Japanese criteria here.

    1) When there is 0.3–0.5g or more of proteinuria per day.

    Puchiko had urine soaked in protein more than any other IgA Nephropathy patient, excreting about 40 times more urine protein than normal.

    2) When a massive amount of proteinuria is observed (e.g., Nephrotic Syndrome).

    3) When there is acute kidney failure (a state where the kidney’s filtration function worsens over a week).

    The condition where acute renal failure is accompanied by blood in the urine is called “Rapidly Progressive Glomerulonephritis (RPGN).” This often occurs due to systemic diseases and requires prompt diagnosis and treatment.

    4) When diagnosing the cause of unexplained renal failure without hematuria or proteinuria.

    5) For diagnosing the cause in a transplanted kidney.

    Of course, even if you meet the above criteria, you may not be able to undergo a kidney biopsy. For instance, if:

    • The kidneys are atrophied or there is a size difference between the left and right kidney according to an ultrasound.

    • A bleeding tendency cannot be controlled.

    • There is an infection in the kidney itself or the surrounding area.

    • There are morphological abnormalities in the kidney, such as Polycystic Kidney Disease (PKD).

    • The patient cannot comply with instructions during the examination or maintain post-examination bed rest.

    • The patient does not wish to or cannot give consent.

    Also, the doctor told Puchiko that patients with only one kidney cannot have the biopsy.

    2. Why is the Kidney Biopsy Necessary?

    Puchiko’s failure to undergo the biopsy initially, only to later receive unsuccessful treatment, is a perfect example of its necessity. Most IgA Nephropathy patients likely follow the sequence: Kidney Biopsy → Tonsillectomy → Steroid Pulse Therapy.

    However, Puchiko’s former doctor said, “In my gut feeling, after 40 years at [a famous university hospital], you have IgA Nephropathy. Your hematuria won’t disappear.” Based solely on that gut feeling, Puchiko underwent a tonsillectomy but was only treated with medication for blood clots, hyperlipidemia, and high uric acid.

    Two years passed without any drugs effective against IgA Nephropathy. And what happens to people in such a state? “You’re just losing time and money without knowing the correct status! Achieving remission after the disease has progressed takes more time and money! Is that okay? Do you want to end up like Puchiko? The reason you need the biopsy is precisely so you don’t end up like her. Decide on treatment based on data, not a gut feeling!” I want to scream this to my readers. Don’t you feel the necessity? Don’t the words of someone who failed penetrate to your very core?

    To reiterate the necessity of the kidney biopsy: it reveals the current status of your kidneys. If normal is Grade 0 and mild renal dysfunction is Grade 1, then renal failure is Grade 4. When Puchiko finally had her kidney biopsy, she was at Grade 2. The biopsy shows how much the kidney tissue has been threatened by IgA. This detailed status allows doctors to tailor the treatment accordingly. There is so much information you can’t get from just urine and blood tests alone.

    Did I manage to convey the need for the biopsy? From here, I’ll share Puchiko’s experience of the procedure.

    3. The Procedure

    As a prologue, before the kidney biopsy (which was before her hospitalization in Puchiko’s case), an ultrasound is performed to check for kidney atrophy, left-right size differences, or morphological abnormalities. To prepare for bleeding, anticoagulant drugs (so-called “blood thinners”) are stopped. Since she was taking them for clot prevention, Puchiko had to go without them during the biopsy hospitalization.

    There are two methods: local anesthesia in the patient room/ward (which Puchiko had) or general anesthesia in the operating room.

    For the procedure: Since movement is strictly prohibited for 24 hours after the biopsy—even for going to the bathroom—a urinary catheter is placed. Puchiko said this was the most painful part of the entire kidney biopsy. She was furious at me afterward. I apologize. I don’t want to shock you with the word “painful,” but it is painful. Why? Because in her case, the attempt failed four times, and the catheter was removed and reinserted once. It was a tragedy.

    Now, for the main event. She was moved to the specialized room on her bed. Lying face down, her back was heavily slathered with Iodine (like applying a massive amount of toner). Three doctors, three nurses, and one person who looked like a technician—many eyes were fixed on Puchiko’s iodine-coated back and waist area. They use an ultrasound to observe the kidney’s shape, and multiple doctors determine the needle insertion point. After injecting local anesthetic into the skin, a thin needle (about the size of a ballpoint pen tip) is inserted through the back, and anesthetic is injected onto the surface of the kidney once the needle reaches it.

    The doctor says, “Now, I will insert the needle… Take a breath in—Now! Hold your breath completely.” A loud thwack sound is heard. The needle enters the kidney, and a small piece of the kidney is collected. The tissue is about the thickness of a pencil lead and 1 to 2 cm long. I was watching the whole thing from behind and got goosebumps.

    Only one kidney is tested; in Puchiko’s case, it was only the left one. The technician checks the collected tissue under a microscope to ensure the desired sample is included. If it’s insufficient, the collection is restarted. (Puchiko’s collection was restarted.) After the biopsy ends, the area is compressed for about 10 minutes while lying face down to stop the bleeding. The doctor’s pressure was so strong I worried Puchiko’s body might literally crack.

    After hemostasis, she had to lie on her back for 24 hours of strict bed rest, without moving at all. She survived by using a straw attachment for her water bottle. Since Puchiko couldn’t eat by herself, a nurse assisted her with her meals. She had the biopsy in the early afternoon, and by 6 PM, she was allowed to raise the head of the bed slightly to a seated position.

    4. About the Pain

    The kidney biopsy itself involved only a slight prick from the anesthetic injection, and apparently, there was no pain from the needle stabbing the kidney. She had been told, “It’s going to hurt,” so Puchiko expected pain after the anesthetic wore off, but she described the pain level as a “refreshing, wasabi-like sting.” Many survivors say that the absolute bed rest is the hardest part, and nurses warned her about the difficulty, but Puchiko didn’t find it hard at all. People with chronic lower back pain might find it tough, though, as lying on your back puts a strain on the lower back.

    5. Coping During Absolute Bed Rest and Things to Note

    What did Puchiko do during her absolute bed rest? She listened to podcasts on Spotify: Kemio’s Ear Cleaning Club and The Fabulous World of the Kano Sisters (which were airing then). Lying in her large shared room bed, she was laughing so hard she was silently rolling around—well, she couldn’t actually roll around because of the bed rest, but she looked like she was having fun.

    I know some of you reading this are worried: “What if it hurts?” “What if the results are bad?” The kidney biopsy hospitalization is just one or two days of enduring the procedure plus the stress of being hospitalized. But it reveals the path you must take next. Instead of being consumed by worry, you understand what needs to be done. Even if the results are bad, you now have a treatment plan to assemble. Knowing this brings true peace of mind. To be freed from vague, frustrating anxiety, this is a time you absolutely must overcome. We, too, are on the other side of this challenge. We wholeheartedly support you.

  • The Importance of Choosing Your Nephrologist Wisely Part 2

    ※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.

    ⇩

    https://recordbygeorgecrouch.com/the-importance-of-choosing-your-nephrologist-wisely-part-1/

    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!

  • The Importance of Choosing Your Nephrologist Wisely Part 1

    The Importance of Choosing Your Nephrologist Wisely Part 1

    ※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

    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.

  • Signs of IgA Nephropathy That Puchiko Now Regrets Ignoring

    Signs of IgA Nephropathy That Puchiko Now Regrets Ignoring

    ※This is Puchiko’s experience and is not a substitute for diagnosis or treatment.

    The physical changes that appear before an illness is discovered are often easy for many people to overlook. Here, I will talk about the signs of IgA Nephropathy that Puchiko experienced. If you have reached this article and are feeling similar symptoms, please consider getting an early checkup. These are just the signs that Puchiko ignored.


    This is a picture of the kidneys’ plea, which Puchiko drew for another blog. I asked Puchiko and got permission to use it.

    1. Do Your Tonsils Swell Frequently?

    Since childhood, whenever Puchiko caught a cold, her tonsils would swell, and due to the repeated inflammation, her tonsils became enlarged. Tonsils have tiny crevices where tonsil stones (tonsilloliths) accumulate. These foul-smelling masses are composed of shed epithelial cells, lymphocytes, white blood cells, bacterial clumps, inflammatory breakdown products, fatty acids, cholesterol, calcium phosphate, and food debris. They are a cause of bad breath. Usually, if they are bothersome, they can be professionally removed by an ear, nose, and throat (ENT) doctor. However, because her tonsils were so enlarged (Grade 2 out of 3), she could see them and removed them herself. This is absolutely something you should never do, but she did not listen to my words. Her tonsils were simply that enlarged that she could easily see and remove them.

    My TIPs to you: Pay attention if you frequently have swollen and enlarged tonsils. Why? Because IgA Nephropathy is a disease where the lesion is in the kidneys, and the causative site, the tonsils, might seem unrelated, making it easy to overlook.

    2. Do You Frequently Have Your Mouth Open?

    Related to the above, many people who frequently have swollen tonsils are likely mouth breathers. When Puchiko was suspected of having IgA Nephropathy, she read various papers about tonsils. Her parents told me that she had been a mouth breather since childhood after a pediatrician accidentally injured the back of her nose during a cold. Because of this, not only were her tonsils prone to swelling, but she also had a vacant expression with her mouth slightly open. Oops, I said too much. Due to this influence, her jaw development was poor during childhood, leading to an adenoid face. Mouth breathing is generally not good for jaw formation. I will omit the details about adenoid face here, but as an adult, there is little one can do besides relying on cosmetic surgery. The mouth is for digestion; the nose is for breathing. Let’s breathe through the nose. In addition to the above, mouth breathing is also a sign.


    3. Do You Mistake Hematuria (Blood in Urine) for Menstrual Effects?

    Since I’m not a woman, I don’t know the reality, but it is common for women to get re-tested for urine due to menstruation. Puchiko failed her urine tests several times in her teens and twenties. In a health checkup in her late twenties, she was called back for re-testing due to hematuria. At that time, she felt a slight sense of unease. The source of this feeling was that something felt different from before. However, she didn’t want to admit that something was wrong and averted her eyes, believing a young person like her couldn’t possibly be sick. However, this test was taken one week after her period had ended. She knew it should no longer be affected by menstruation. Yet, she felt uneasy about the result. I could only watch and urge her to get re-tested. Anyone who has been called for a re-test has likely searched the internet repeatedly and arrived at the common answer: “Please go get re-tested.” Had she gone for re-testing at this point, her treatment time might have been shorter.

    4. Did You Fail a Urine Test for Proteinuria (Protein in Urine)?

    This is the final warning sign the kidneys are struggling to send you, like a fire within the kidney itself. Puchiko had a +1 result for proteinuria on her health checkup. The action she took this time was, again, searching the internet. She was hesitant to take the step of getting a re-test. She took the phrase “a little proteinuria can occur when fatigued” written there at face value… no, she willed herself to believe that was the case. However, normally, protein in the urine does not appear so easily.

    If you are reading this article now because you were anxious and searched after an abnormal result for proteinuria in your health checkup, the only thing you need to do is get re-tested. Puchiko, in this state, told herself, “It must be fatigue,” skipped the re-test, and went to Australia for a working holiday. In the end, she ignored my words. In times like these, you should listen to the advice of those around you.

    5. Is Your Urine Foamy?

    After that, Puchiko started noticing that her urine was foamy. This is a repeated paragraph in the user’s previous context, please check and fix the issue.

    After that, Puchiko started noticing that her urine was foamy. She felt uneasy about this too and tried to calm herself by searching the internet. Articles related to kidney disease appeared, but it is human nature not to want to see inconvenient information. Again, she chose an article that said, “Urine can be foamy when you are tired,” and tried to reassure herself by reading it. I will warn everyone: the reason for the foam is proteinuria. As a result of neglecting this, her urine began to look like beer foam three months later. Still, due to being overseas and then working part-time while attending school at night after returning home, she hadn’t had a health checkup for about three years.

    6. The Result of Ignoring the Signs I Listed Here

    Finally, at the health checkup for her new job (since the workplace provided a checkup upon entry, a prior checkup result was not required), she hit values of Proteinuria +3 and Hematuria +3. Even Puchiko, who had continuously ignored the signs while feeling uneasy, realized something seriously bad was happening. Incidentally, in Japan, workplace health checkups typically only report up to +3, even if the actual value is higher. The maximum value detectable in a nephrology clinic test is +6, and her initial test showed Proteinuria +4 and Hematuria +4. Having neglected it for years, her condition did not improve easily even after two years of treatment (※She is currently in remission).

    If you have arrived at this article after anxiously searching the internet because you recognize the signs Puchiko felt, please be brave and get a re-test. It costs money, it’s bothersome, and it’s scary, but putting it off will cost more money, be more bothersome, and become much scarier.

    As a partner who always watched the affected person, I’m not supporting anyone with IgA Nephropathy or similar symptoms. Take the courage to take the first step!