Record by George Crouch

Tag: Renal

  • Puchiko’s Overseas Trip with Restrictions: Australia, Part 2

    About a year ago, Puchiko traveled to Australia. I observed closely that even with dietary restrictions and health management challenges due to renal disease and vesical condition, as well as aerophagia (air swallowing), Puchiko—who lives with these limitations—could successfully manage an overseas trip without drastically changing her usual lifestyle, provided she planned carefully. I’ve written down her experience here.This is Tips about Overseas Trip with Restrictions. This is the continuation of the previous Part 1

    Puchiko’s Overseas Trip with Restrictions: Australia, Part 1

    1. Day 2 with Overseas Trip with Restrictions

    Puchiko decided to take the scenic railway to Kuranda, a famous tourist spot she had also visited during her working holiday. She pre-booked the train, which made it slightly cheaper.

    The blue train connecting Cairns and Kuranda.

    The blue train connecting Cairns and Kuranda.
    The Scenery visible from the window on the way to Kuranda.

    The scenery visible from the window on the way to Kuranda.
    The koalas in Kuranda.

    The koalas in Kuranda.

    When she arrived in Kuranda, Puchiko took a commemorative photo with a koala for the third time in her life. This time, she also took a picture with a python. A large number of Japanese tourists were there, but while everyone took photos with the koalas, she was the only one posing with the python. When I asked her what she thought, she said the python was cool, soft, and surprisingly pleasant to the touch. The python in the picture with her was a white and orange female. She was very cute and had a service-minded nature, giving a direct camera look.

    The stylish white and orange python that posed for a photo with Puchiko.

    The stylish white and orange python that posed for a photo with Puchiko.

    After touring Kuranda, Puchiko was about to have lunch, but she felt something was off. She had started feeling unwell around the time she boarded the train at Cairns Central Station. She ordered dal curry but after three bites, she suddenly felt nauseous and rushed to the restroom. Since I couldn’t follow her inside the restroom, I waited outside, but she told me later that she had vomited.

    The gate of the Kuranda Rail Station.

    The gate of the Kuranda Rail Station.

    By the time she boarded the return train, Puchiko was completely worn out. In fact, she had lost about 3 kg (6.6 lbs) of weight just before the trip. The malaise had already surfaced when she ate chanpon at Narita Airport. Although she was wearing a mask, she unfortunately slept with her mouth open on the train and ended up with a sore throat. It was regrettable, considering how carefully she managed her health on the plane. This incident made her decide that she must also carry nasal breathing strips for times when she might accidentally fall asleep while outside. When she returned home, completely exhausted, a cute visitor had arrived.

    The light- colored calico cat that visited Puchiko's doorstep.

    The light-colored calico cat that visited Puchiko’s doorstep.

    2. Day 3 with Overseas Trip with Restrictions

    Despite being worn out, Puchiko had to wake up at 1:00 AM. She got ready and walked through the dark to the bus stop near the Botanical Garden to wait for her bus. This was because Puchiko had booked a hot air balloon ride early in the morning. Puchiko was the first passenger on the bus; all the subsequent passengers were Japanese tourists staying at hotels. She thought, “They must be rich.”

    Just when she was feeling unwell, she got motion sickness, and Puchiko vomited as soon as she arrived at the site. The plastic bag she had brought came in very handy that day.

    Once in the hot air balloon, she certainly enjoyed the view, but being quite petite (as her nickname ‘Puchiko’ implies), a couple that was quite large for Japanese people stood in front of her. When they took commemorative photos, she didn’t show up in the pictures. Naturally, I, Puchiko’s imaginary friend, didn’t appear either.

    The early morning sky photographed from a hot air balloon.

    The early morning sky photographed from a hot air balloon.

    After landing, there was time for a light meal, and though Puchiko didn’t eat, she was thirsty and accepted a drink. The only non-alcoholic option was orange juice, but what she was handed was actually champagne mixed with orange juice by mistake. The moment she drank it, she immediately felt sick and struggled repeatedly to hold back the vomit. On the bus ride back, she vomited quite a bit. However, learning from the previous day’s mistake, she kept her nasal breathing strip on and wore a mask during the hot air balloon ride and the bus ride, only removing them to vomit or drink water.

    When she got home, all Puchiko ate was one pack of strawberries. This could hardly be called self-catering. Her throat hurt even more from the vomiting, so she sucked on a medicinal candy-like lozenge she bought at COLES (supermarket) and spent 12 hours sleeping and resting.

    The half-eaten strawberry that was the only food Puchiko could manage to eat.

    The half-eaten strawberry that was the only food Puchiko could manage to eat.
    The lozenge that caused a numbing sensation and suppressed inflrammation when licked.

    The lozenge that caused a numbing sensation and suppressed inflammation when licked.

    3. Day 4 with Overseas Trip with Restrictions

    After a good night’s sleep, Puchiko’s sore throat had disappeared. If she hadn’t had her tonsils removed, she might have had a high fever and blood in her urine right now.

    For breakfast, Puchiko ate homemade asazuke (lightly pickled veggies), white rice, and homemade miso soup. She decided to go sightseeing in the city that day. She walked past a nightclub she used to frequent on Friday nights during her working holiday days. It felt like a world completely separate from her current life, where she goes to sleep at 8 PM. She continued walking and looked out at the Esplanade.

    The kangaroo road sign near the Airbnb.

    The kangaroo road sign near the Airbnb.
    The Esplanade.

    The Esplanad.
    The weekend market.

    The weekend market 
    The half melon bought at that market.

    The half melon bought at that market.

    She went to a market that only opens on weekends and bought a melon. A half-cut melon was A$2 (¥200). In Japanese supermarkets, they usually cost ¥1,000 (A$10) to ¥2,000 (A$20).

    Next, Puchiko went to the casino. You can enter by showing your ID to the guard. Slots seem to be available during the day, but table games only start in the evening. During her working holiday, someone from her language school was strapped for cash and earned A$100 gambling at this casino.

    The dazzling casino.

    The dazzling casino

    Puchiko returned home and cooked Dandan Noodles for lunch using brown rice noodles and oat milk. Rice flour allows for lower protein intake than wheat flour, and oat milk allows for lower protein intake than soy milk. Since some vesical condition patients seem to experience inflammation from soy products, this substitution is recommended for them. However, it’s hard to find additive-free oat milk in Japan. Irritants are also bad for vesical condition, so she added a small amount of shichimi chili pepper to make it only mildly spicy. She then indulged in the half-cut melon she had just bought at the market. Melons are high in potassium, so those with kidney disease requiring potassium restriction should refrain from such recklessness.

    Afterward, Puchiko strolled through the Botanical Garden near her Airbnb. However, as the clouds show, it became a squall, so she rushed back home. As I wrote in a previous article (【Mental Health】Ultimate Guide to Clinic Stress Relief and Finding Peace in Nature), she enjoys strolling through nature in various places because the plants and animals that inhabit them are different. After returning home, she made and ate Tomato Pasta using brown rice noodles, and then went to sleep.

    The Botanic Garden.

    The Botanic Gardens
    The road near the Airbnb, which Puchiko used to walk often when she lived this neighbouhood for her homestay.

    The road near the Airbnb, which Puchiko used to walk often when she lived in this neighborhood for her homestay.
    The lake in the Botanic Garden.

    The lake in the Botanic Gardens.

    4. Day 5 with Overseas Trip with Restrictions

    Since she was returning home the next day, she needed to use up her ingredients. For breakfast, she cooked and ate zousui (rice porridge). She decided that this day would be for souvenir shopping. She would have preferred the Night Market, but as the name suggests, it only opens after 4 PM. Being located outside the city center, she felt it was too much hassle… plus, she gets sleepy in the evening. She decided to buy souvenirs at a souvenir shop in the city center starting in the morning.

    The benches in the city center are decorated with Aboriginal art. The trees in the city are full of bats! Tourists try to take photos, but beware of droppings, which are full of germs!

    Puchiko returned home and cooked and ate Tanmen (salt-based ramen with veg) using brown rice noodles. Afterward, she took a walk near the Airbnb to the area where her former homestay was located.

    Back then, Puchiko shortened her homestay period compared to what was planned. She grew disgusted because the host father would touch her feet with his bare feet during meals, told her a rotten tangerine was “just for her,” called her with a whistle like calling a dog, and the separated son (who was her age) brought his girlfriend over every night and made noise, plus the host mother was hysterical. She quickly moved to a share house.

    For dinner, Puchiko cooked a bean soup and ate it with white rice.

    6. Return Home

    Breakfast on the day of her return was the leftover bean soup from the previous night and white rice. After eating and getting ready, Puchiko checked out. She called an Uber and headed to the airport.

    The view from the Airbnb window.

    The view from the Airbnb window.
    Before boarding.

    Before boarding

    The lasagna served as the in-flight meal… the salt content was outrageous. Puchiko had to wash it down with a massive amount of water. I wouldn’t recommend it to anyone with kidney disease! Since she skipped dinner, she probably managed to keep her daily salt intake within the limit.

    7. Message

    Overall, unexpected things happened in the first half of the trip, and it seems the flow was different from what Puchiko had anticipated. However, I observed that she was able to enjoy her overseas trip while skillfully controlling her dietary restrictions due to renal disease and vesical condition. When you are in the middle of treatment, it’s easy to think negatively; she was no exception. But I believe that by finding ways to enjoy life through careful planning, a brighter path can open up. While there is no need to force yourself to be positive, I learned from her that deciding on something you want to do and preparing for it and experiencing it can become energy for the soul.

    Though it’s still a ways off, Puchiko is planning a trip to Belgium in 4 months, and I intend to write about that next Overseas Trip with Restrictions.

  • Puchiko’s Overseas Trip with Restrictions: Australia, Part 1

    About a year ago, Puchiko traveled to Australia. I observed closely that even with dietary restrictions and health management challenges due to renal disease and vesical condition, as well as aerophagia (air swallowing), Puchiko—who lives with these limitations—could successfully manage an overseas trip without drastically changing her usual lifestyle, provided she planned carefully. I’ve written down her experience here. This is Tips about Overseas Trip with Restrictions

    1. The Spark and the Search for Self-Catering Accommodation

    2 months after her renal disease went into remission, Puchiko suddenly had a spontaneous thought at work: “I’m going to Australia!” I was worried because she had been very depressed during her steroid treatment. I was personally relieved that her steroid treatment was over and she felt well enough to go on an overseas trip.

    The essential condition for Puchiko’s trip, given her restrictions, was:

    • The ability to cook for herself (due to renal disease and vesical condition).

    In other words, she needed to rent a house, not a hotel! That’s when Puchiko set her sights on Airbnb. Cooking for herself also helped keep the costs down.

    2. ETAS Application: Essential for Entering Australia

    ETAS is the Electronic Travel Authority scheme, which replaces the traditional passport sticker visa with an online registration system on the Australian government’s computer, granting an entry visa (ETA).

    The app screen where you can apply for ETAS.

    The app screen where you can apply for ETAS.

    3. Luggage Storage Before Check-in

    Puchiko was scheduled to arrive in Australia (Cairns) at the very early hour of 4:25 AM. Since the check-in time for her booked Airbnb was 2:00 PM, she had a lot of time to kill. It would be difficult to sightsee while carrying a suitcase. Since I am her imaginary friend, I couldn’t carry the suitcase for her. Being clever, Puchiko pre-booked a service to store her luggage.

    The app screen for booking a stop that holds your suitcase.

    The app screen for booking a shop that holds your suitcase.

    She used an app called Nannybag to reserve a shop that would hold her luggage. The fee wasn’t very expensive, about ¥1,000 for 6 hours. Make sure to check the pricing, as it varies by shop.

    These were the crucial preparations.

    4. Departure and the Flight with Overseas Trip with Restrictions

    Puchiko decided to have dinner at the airport before checking in, clearing immigration, and dropping off her suitcase. This was because she has to leave enough time between eating and sleeping due to her existing gastroesophageal reflux disease, aiming to finish her meal 2 hours before lying down. She therefore canceled the airplane meal and ate chanpon noodles at the airport. This was an unavoidable meal out. Anticipating such situations, she had brought and took a salt-absorbing supplement called Shio- nain (塩ナイン).

    Puchiko finished her meal, cleared immigration, and checked her suitcase. She brushed her teeth, washed her face, and applied moisturizer. She also bought 1,200 ml of water for drinking and for using a nasal rinsing on the plane. Nasal rinsing is an important habit for Puchiko; it washes away the filth accumulated in the nasal passages from a day of breathing. It is vital for health management in the close confines of an airplane cabin. This nasal rinsing might be the key to the success of Puchiko’s Overseas Trip with Restrictions.

    Puchiko's beloved health secret: nasal rinsing.

    Puchiko’s beloved health secret: nasal rinsing.

    When Puchiko boarded and took her seat on the far right of the 3-seat row, the middle seat remained empty, and one other man sat on the far left. So, I took the middle seat. The man on my left asked Puchiko, “Traveling?” and then began talking excessively about himself, even though she hadn’t asked. He was 32, had a cross tattoo on his forehead, was twice divorced with eight children, had an arrest record, and his company went bankrupt due to a drug control violation. The man asked for her social media. To avoid confrontation, she gave it to him there (she immediately blocked him after they separated). She simply listened passively to his self-introduction. Determined to sleep well during the flight, she prepared for bed. She put a nasal breathing strip over her mouth, wore a mask, inserted earplugs, and put on an eye mask. She then fell into a deep sleep.

    However, this encounter with the man marked the beginning of Puchiko’s day of hell. I continuously punched the man during the entire flight, but it was no use. That is the sad reality of an imaginary friend.

    6 hours later, Puchiko awoke and was filling out the immigration card when the man asked her, “Hey! I don’t understand English at all. Tell me how to fill this out!” Being thoughtful, she helped him. However, in her mind, she thought, “This guy is annoying.” Just before landing preparation, she went to the bathroom and used the water she bought to do nasal rinsing with her travel-sized NeilMed SINUS RINSE bottle.

    5. Immigration

    After collecting Puchiko’s suitcase and showing her immigration card, just as Puchiko’s own immigration clearance was finished, an airport official approached her, saying, “Hey, you! Are you this man’s friend?” The man from the plane was there. Ah, let’s call this man “Cross-Forehead Man.”

    The official told Puchiko, “Well, this guy doesn’t know the address of where he’s staying…” I told her to ignore him, but she must have felt sorry for the official. She asked Cross-Forehead Man where he was staying. He replied that he was staying at a backpackers hostel attached to a nightclub she used to frequent during her working holiday in Australia. She relayed this to the official, and that was the end of it.

    Afterward, Puchiko started heading to the city to drop off her suitcase. However, as she went to the Uber parking area to go to the city, Cross-Forehead Man followed her, forcing her to share the ride to the city. She dropped off her suitcase at the place she had reserved with Nannybag until check-in time.

    6. Day 1 with Overseas Trip with Restrictions

    Next, Puchiko waited for a shop to open at 9:00 AM to solve the SIM card problem. The problem had occurred when she tried to swap the pre-purchased and activated SIM card at Narita Airport. The slot wouldn’t open easily, and the pin she was using to open it broke. At that time, the pin hit a crack in her smartphone’s glass protector, and the broken film stabbed her fingernail, causing bleeding and quite a lot of pain.

    Therefore, Puchiko had planned to ask for help from the SIM card sellers once she arrived locally. She still had 3 hours until 9:00 AM. She decided to kill time at a cafe. Cross-Forehead Man, of course, followed her. I told Puchiko many times to ignore him, but I suppose, in that situation, it was difficult to do so.

    Puchiko ordered herbal tea and sat down. Cross-Forehead Man asked her to inquire about where he could smoke marijuana. She ignored him. He then showed a translation app to the clerk and asked where he could smoke marijuana. The clerk was troubled. Puchiko wished the man would just go away.

    While at the cafe, the man looked at Puchiko’s Instagram and found out about her illness. He then asked her, “Your complexion looked better before. Is this photo from before you were sick?” I lifted the chair from the next table and aimed it at the rude man’s head, but it was useless. This is yet another empty reality of an imaginary friend.

    Finally, 9:00 AM arrived, and Puchiko entered the SIM card shop. She apologized to the clerk, explaining her situation despite not buying the product there. The clerk easily swapped her SIM card and even gave her a spare pin so she wouldn’t have trouble after returning home.

    When Puchiko left the shop, the rude Cross-Forehead Man, who was still clinging to her, said, “I want a SIM card too.” I thought he should just buy one himself. And then I didn’t understand. Because the rude Cross-Forehead Man already had a smartphone that could be used overseas!

    I respect Puchiko’s good nature. She told the clerk, “He wants a SIM card”. The clerk showed him a sample and said, “We only carry monthly SIM cards now. There’s a COLES (supermarket) downstairs that has weekly SIM cards, so if you buy our brand’s weekly card and bring it here, I’ll activate it for you.”

    Puchiko translated this into Japanese for the rude Cross-Forehead Man and sent him to buy it. However, the rude Cross-Forehead Man bought a SIM card from a different manufacturer, saying, “It was cheap.” Of course, when he brought it back, the clerk refused to activate it. She decided she couldn’t deal with the “stupid and rude Cross-Forehead Man” anymore and escaped, saying, “Sorry, I’m going to do things alone now.” I praised her for helping the “stupid and rude Cross-Forehead Man” as much as she did. Puchiko grumbled, “If you can’t understand English at all and have to involve strangers, you should just use a tour.”

    Finally free, Puchiko went to COLES, the supermarket, to buy ingredients for self-catering. In the afternoon, the Airbnb owner contacted her, saying, “You can come drop off your luggage now, even though check-in isn’t until later.” She took an Uber to the Airbnb. The Uber driver pointed to his hat and said, “My son bought me this hat as a souvenir from Tokyo.”

    When Puchiko arrived at the Airbnb, the owner told her, “If you tell them you’re staying at my place, you can get a discount at that restaurant.” Check-in hadn’t happened yet, so she couldn’t cook, and above all, she was exhausted. She was also hungry, so as a cheat day, she decided to eat at a restaurant she had been curious about but never visited when she lived nearby during her working holiday days.

    Green pea pasta
    She ordered the green pea pasta.

    After finally checking in, Puchiko was completely exhausted and didn’t leave the house for the rest of the day. However, she did not forget to block the “stupid and rude Cross-Forehead Man” on social media.

    Next time, I’ll write about Day 2 Overseas Trip with Restrictions.

    Puchiko’s Overseas Trip with Restrictions: Australia, Part 2

    Puchiko’s Overseas Trip with Restrictions: Australia, Part 2

  • 【Steroid Pulse Therapy Renal Disease】Mischievous Steroid 5 Difficult Lessons from Puchiko’s Experience

    ※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 Steroid Pulse Therapy renal disease?” 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 renal disease treatment, I wondered, “What exactly is a Steroid Pulse?” Based on what I’ve witnessed through Puchiko’s experience, I will explain why Steroid Pulse Therapy renal disease is administered.

    1. Why Do We Use Steroid Pulse for Renal Disease?

    The reason for Steroid Pulse Therapy renal disease is their powerful ability to suppress inflammation caused by the immune response. In her renal disease, 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 her renal disease but also for various other renal diseases (like nephrotic syndrome), cancer treatments, and collagen diseases.

    2. Steroid Pulse Therapy Renal Disease Treatment Details

    However, Steroid Pulse Therapy for renal disease 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.”

    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 Steroid Pulse Therapy Renal Disease 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.

    adrenal glands and kidneys. The sleeping adrenal glands by steroid pluse.

    When a large amount of steroid enters the body, the adrenal glands, no longer needing to produce their own, fall asleep.

    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 renal disease 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.

    Puchiko 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.

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

    You Might Also Like

    【Kidney Biopsy Experience】The Must-Read Necessity of Data-Driven Treatment for Her Renal Disease
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  • 【Tonsillectomy Renal Disease】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 renal disease 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. The tonsils, experiencing a bug or malfuction, launch a drone attack og IgA immunogloblins which are meant to stay in the tonsils against the kidneys, causing damage to the renal tissues. Therefore, the tonsils, which have been corrupted by the bad influence, are removed.
    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.

    Puchiko's excised tonsils.

    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 renal disease. 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!

    You Might Also Like

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  • 【Kidney Biopsy Experience】The Must-Read Necessity of Data-Driven Treatment for Her Renal Disease

    ※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 renal disease (same as her) 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 Do They Do a Kidney Biopsy for Renal Disease?

    Puchiko’s failure to undergo the biopsy initially, only to later receive unsuccessful treatment, is a perfect example of its necessity. Most her renal disease 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 renal disease. 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 renal disease. 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 I g A. 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.

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  • 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.

    The Importance of Choosing Your Nephrologist Wisely Part1 is here.

    ⇩

    The Importance of Choosing Your Nephrologist Wisely Part 1

    7. Her Renal Disease Treatment in Japan

    Since I’m writing in English, I assume many non-Japanese readers are reading this. In fact, renal disease 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 renal disease Radical Treatment Network founded by Dr. Hotta, an authority on her renal disease 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 her renal diseasemight 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 renal disease 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 renal disease 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 renal disease. 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 5 -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 her renal diseaseand 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 renal disease. 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 2 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 Renal Disease That Puchiko Now Regrets Ignoring

    Signs of Renal Disease 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 renal disease 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.

    Alert from the kidneys.

    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 renal disease 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 havingrenal disease, 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 renal disease or similar symptoms. Take the courage to take the first step!