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Patients' Voice

What I value the most "To remain my mind healthy" 

I’m Rieko Matsubishi of Jinyu-kai (a group within the Japanese Association of Dialysis Patients), Hyogo in Japan. In 2021, our group celebrated its 50th anniversary. Compared to the long history of our group, I have only been receiving hemodialysis for 17 years. 

Before undergoing dialysis treatment, I was the Parent-Teacher Association (PTA) president of my three children’s elementary and junior high schools. I was also the vice-chair of the Mothers' Committee of PTA not only in a local region, Amagasaki, but also in Hyogo prefecture, Kinki Region, and across Japan. So, I was busy. But since I had worked as a medical clerk at a neurology hospital before I got married, I was very careful about my health to the extent that I could be called a "health nut" and took a physical checkup at my husband's company every year. However, I was pressed for time every day, and my blood pressure was high. I think I was too busy. 

Just before 50 years old, I was diagnosed with uterine fibroids and gall bladder polyps in my physical checkup, and I ended up undergoing a total hysterectomy and cholecystectomy. Within one year after the surgery, my kidney function declined and I had to start treatment for acute kidney disease at Kansai Rosai hospital. I tried to follow the dietary therapy to avoid receiving dialysis as much as possible. I don't eat much meat or fish, because I am a fussy eater. So, I didn't think the dietary therapy was very hard at that time. My family and friends were surprised to hear that my kidney function was bad. And they advised me to take Chinese herbal medicine or persimmon leaf tea, etc. As I listened to them, I gradually became "depressed" and had many sleepless nights thinking about the possible causes of my kidney failure, asking myself “Why do I have to receive dialysis treatment?” and “Did I do something wrong to my body?”. Then I resigned from all my positions. 

During the time of nondialysis dependent chronic kidney disease, I only saw the doctor once a month and had an injection to treat my renal anemia. However, two years later, I finally needed to start hemodialysis. So, my husband did all of the housework, and I spent my days looking at the ceiling in bed. 

I read various medical books. At such times, I read a short essay by Ayako Sono titled "To You on Dialysis”. It was written for her friend who was depressed because of her dialysis treatment, and Ms. Sono said in the essay that it might be hard to go to the hospital three times a week, but that the time during the treatment can be used to listen to the radio or music, write haiku (Japanese seventeen-syllable poem), or read books. This helped me to get out of my depression. I thought it would be okay if I could survive for the first five years of hemodialysis, so I decided to do the things I like to do, such as traveling with my husband, going to concerts, and reading about 50 books a year. Rather than lamenting that you can’t do various things anymore due to starting dialysis, I think it is important to look for things that you can do. I have been doing Japanese calligraphy and yoga for over 30 years 

now. 

When I just turned 60 years old after 10 years of receiving dialysis, I thought about what I wanted to do for the rest of my life. I wrote my "Ending Note" and entrusted it to my family. I also wanted to study Japanese literature, so I decided to enroll in the correspondence program at Bukkyo University in Kyoto. In the spring and summer, on Saturdays and Sundays, I commuted two hours each way from my home in Hyogo to the university in Kyoto for schooling. In addition, I continued to submit the reports including my graduation thesis to get 124 credits and graduate from the university in four years. 

When I was thinking, “Now what should I do?”, I was offered the position of president of the Nephrology Association and decided to take it. By the time I started on dialysis, our country had already established social support to cover the medical costs for dialysis patients and provided safe and secure dialysis treatments. I am grateful to my predecessors in Jinyu-kai for their various activities to improve the environment surrounding dialysis patients. I would like to continue our activities so that all patients can maintain safe and secure life on dialysis no matter what the world brings. Our association has a "Women's Committee" and its theme is “Be Active and Stylish”. My pride is that I don't look like a handicapped person. I hope to remain my mind healthy although I am disabled in my body. 

 

 

 

 

 

The president of Jinyu-kai, Hyogo in Japan 

Rieko Matsubishi

 

Translated Japanese into English by Atsuko Sakai PhD, RD at Saito medical Clinic, Hyogo in Japan 

Supported by Keiichi Sumida MD, MPH, PhD, in Japan/ University of Tennessee Health Science Center in US and 

Kunitoshi Iseki MD, Director, Clinical Research Support Center, Nakamura Clinic, Okinawa in Japan 

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Mr. Takeshi Shukunobe, a Japanese patient who has undergone hemodialysis for 34 years, shares his own experience and perspective on medical treatment, with emphasis on the importance of mutual participation in clinical decision making between patients and health professionals.

I learned that my kidney had a lot of cysts during an operation some years ago. At that time, I didn’t take notice of it. I was still young by then and I thought the kidney cysts were not a problem. 

 

But later, I found that my mom had similar problems, but much more serious, that the disease eventually caused her kidney failure. Then I become to realize that polycystic kidney disease can be a very serious health issue. Getting such disease is like my body  implanted a time bomb.

 

Nevertheless, I am not panicked because it won't help you feel better. It is fate. God has its own arrangements. I stay to disregard myself being a patient. I keep working. I go to swim or do exercise every day. 

 

Luckily, I am blessed with a very good doctor. I just pay more attention to my diet at my doctor's advice. Essentially, less oil, less salt, less sugar. Avoid too much high-protein food, high folic acid, red meat, and tree nuts. No alcohol and smoking of course.

 

My meal is mainly light. I keep three meals a day.

 

Breakfast may include

oatmeal (boiled with water/fresh milk), 

White bread, boiled egg, macaroni with some ham (no sauce)

 

Lunch/dinner, 

rice/vermicelli/ noodles /Spaghetti, steamed fish, tofu, melons, lean meat, boiled vegetables, chicken meat, tomatoes, turnips, radishes, potatoes, etc. These are usually stewed or steamed with sprinkling seasonings.

 

Besides, I will drink more water. On average I will consume 3,500cc of water daily. Because I have high blood pressure, I have avoided most snacks such as my beloved chocolate, cakes, and ice cream. I rarely go out for meals. I am afraid that the food outside is always salty and greasy. I always bring food with me to work. 

 

Overall, the polycystic kidney disease has not affected my daily life too much. I just have to pay more attention to my diet and keep doing exercise, so I have no worries and continue to live happily every day. 

 

Let's work together to keep ourselves healthy and happy. Thank you.

Patient - Miss Tso Mun Yi

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