Over the past few days, I underwent a comprehensive health check at the hospital, and the results were quite satisfactory. In the blink of an eye, it’s been five years since I underwent a kidney transplant. I’ve written a blog post summarizing my health and treatment over these years.
Onset
Around the age of 30, during a health check-up, I found that my kidney function indicators were not ideal, leading to targeted adjustments. However, over time and with a busy work schedule, I gradually relaxed my focus on health. Even a few months before falling ill, my health check-up indicators were still passable. But when illness strikes, it comes like a landslide, especially with kidney diseases, where the deterioration in the later stages can be extremely rapid.
At that time, I was involved in several projects, and under considerable financial pressure. Despite clear signs from my body, I kept pushing myself, thinking I could hold on a bit longer. Even though my family urged me repeatedly, I never went for the necessary check-ups. It wasn’t until I could hardly eat anything (vomiting immediately after eating anything) that I reluctantly went to the hospital. The diagnosis was swift, as there was no longer any room for discussion. At that point, my creatinine level was over 2100, and hemoglobin at 46. According to the doctors, the fact that I was still alive and able to walk into the hospital was a huge surprise.
Due to severe anemia, I received several blood transfusions, but my hemoglobin didn’t improve much. To expedite a more thorough dialysis, I underwent surgery to implant a dialysis catheter, despite having a hemoglobin level below 60, and thus began my dialysis journey.
Dialysis
There are two forms of dialysis: hemodialysis (the most commonly known form) and peritoneal dialysis. Hemodialysis is usually performed at a designated center or hospital, three times a week, each session lasting four hours. Peritoneal dialysis can be done at home, with the number of daily sessions varying according to the patient’s condition, usually 2 to 5 times, with each dialysis fluid exchange lasting about 20 minutes.
I chose peritoneal dialysis. Compared to hemodialysis, it offers more freedom in terms of location and time. Additionally, peritoneal dialysis tends to better preserve residual kidney function, which is beneficial for future transplants. There are two methods of peritoneal dialysis: manual, which involves manually exchanging the dialysis fluid several times a day, and automated peritoneal dialysis (APD), typically done before sleep by connecting the abdominal catheter to a machine. The machine exchanges the fluid several times during the patient’s sleep. In the morning, the catheter is disconnected, allowing the patient to move about freely during the day. With these advantages, I naturally chose the automated method.
However, reality proved harsher than expected. Post-dialysis, it was found that my peritoneal permeability was not very good. Relying solely on the nighttime dialysis machine was insufficient to remove toxins and excess fluid. Therefore, I gradually increased manual dialysis during the day. By the time of my transplant, I needed 5 manual sessions during the day and 12 hours of automatic dialysis at night, setting a record in my region.
After several months of dialysis treatment and gradual improvement in my condition, my family contacted the transplant hospital, urging me to undergo the surgery. However, due to certain considerations, I was not too keen on the transplant at that time. To outsiders, dialysis may seem boring, cumbersome, and restrictive, but for me, it was a form of physical and mental conditioning. Over these years of dialysis treatment, I underwent a huge shift in mindset, becoming more serene and composed. Moreover, dialysis brought a regular routine to my life, laying the foundation for a healthy lifestyle post-transplant.
Transplant
Finally, after four years of dialysis, I chose to undergo a kidney transplant. To better prepare for the surgery, I had been exercising specifically for a year prior to the transplant. In addition, having unintentionally “missed” several transplant opportunities before, I was very calm when the hospital called. I was confident that the surgery would be successful.
However, things didn’t go as smoothly as expected. On the day of the surgery, complications arose, extending what was supposed to be a 4 to 6-hour operation to nearly 10 hours. Furthermore, on the fifth day post-surgery, many indicators suggested a significant failure. Most importantly, the doctors suspected that the transplanted kidney might have ruptured, leading to a second surgery. Despite the concerning indicators, I felt exceptionally well and faced the second surgery with a relaxed mindset. Later, I learned from my wife that the doctors had prepared my family for the worst. The second surgery was no shorter
than the first and resulted in severe postoperative reactions. However, after a stint in the ICU, I was out of danger. The good news was that the second surgery confirmed that there were no major issues with the first operation, and the transplanted kidney was fine.
After breaking the hospital’s record for the longest post-transplant hospital stay, I finally returned home after 35 days, entering the postoperative recovery phase.
Recovery
Upon returning home, I encountered several challenging issues.
The first was poor physical condition. This was due to significant bleeding at the surgical site following the second operation, requiring urgent treatment by two doctors in the ICU. After this treatment and being restricted to a single position for over 20 days, my lower lungs severely atrophied. Even at rest, my heart rate exceeded 100. To improve my physical condition, I resumed exercise two months post-surgery and have maintained this habit ever since, exercising one to two hours daily.
The second symptom was neurological tremors, a side effect of the medication tacrolimus. The severity varies from person to person, and I happened to have a strong reaction. I could hardly hold chopsticks, similar to Parkinson’s disease. To improve this, I tried writing with a brush daily, not to practice calligraphy but to enhance my control. As the medication dosage decreased and my body gradually adapted, this symptom improved significantly a year after surgery. Now, except for very precise tasks, it’s almost unnoticeable.
The third issue was cognitive impairment. The heavy anesthesia and short-term high-dose steroid treatment significantly affected my thinking. For three to four months post-surgery, I could hardly send a text message without errors. I knew what I wanted to say, but expressing it was a challenge. Being aware of this, I tried to improve by reading, thinking, communicating, and learning. Learning Swift, SwiftUI, and Core Data was also a self-initiated treatment during this time. For more on this period, you can read my blog post “Old Man New Soldier - A Development Memoir of an iOS APP”.
I must say, the years of dialysis were of great help. In the years following the transplant, I’ve maintained a healthy lifestyle and optimistic attitude. With years of care, my health indicators have improved.
Here are some of the regular monthly health indicators I track, showing that my kidney function has improved year by year since the transplant, reaching normal levels. Most transplant patients normalize quickly (days to weeks) post-transplant, then experience issues over time. For me, at least so far, the indicators are still on an upward trend. I hope to continue this way.
Only through long-term accumulation can the value of data be seen. Using the ”Health Note” App, I not only have a clear understanding of my health indicators but also provide important reference data for my doctor and me, allowing for targeted adjustments. If you or your family and friends need to track health data long-term, you might try this app. Please note, the app was initially written for me and is not very user-friendly for beginners, but it’s very functional.
Future
Despite various issues over the years, I consider myself very fortunate. I encountered kind organ donors, had the unwavering love of my family, good luck in turning dangers into safety, encountered excellent medical staff, and received support from many friends.
I’ll be 50 next year and hope to continue living a positive, healthy life with a calm mindset, doing meaningful things for society.
Wishing everyone good health.