Dialysis Diaries: 19 Years Strong, Fighting for Kidney Health in Malawi

Samuel Kumwanje, 48, from Malawi, embarked on an unforeseen journey when diagnosed with kidney failure at 28 years old. Initially misdiagnosed and treated for malaria, his resilience and determination became the driving force throughout a 19-year dialysis saga. Facing challenges, from unhealed fractures that restricted his mobility to a wheelchair to losing his job, Samuel’s life took an unexpected turn. Unyielding, he and some friends, founded the Kidney Foundation-Malawi, advocating for change and achieving milestones in kidney care.

I was born on January 1, 1976, as the youngest son in a family of four. My early years were marked by good health until March 2004, when I began to experience the signs and symptoms of kidney failure. At that time, neither my family nor I suspected kidney failure. We visited various hospitals and each time the doctors would prescribe me treatment for malaria, as the symptoms of both conditions often overlap.

Despite multiple rounds of malaria treatment, my condition did not improve. It was only at the suggestion of Mrs. Namalomba, my sister-in-law and a nurse, that I insisted on electrolytes testing. In August 2004, the shocking revelation came: I was diagnosed with kidney failure at Likuni Mission Hospital. The doctor could not believe that the results belonged to the patient standing in front of him, and he prescribed immediate dialysis. I was subsequently referred to Kamuzu Central Hospital in Lilongwe, the only facility in Malawi offering dialysis services.

Despite the 400km+ distance from Lilongwe, I sought assistance at Queen Elizabeth Central Hospital in Blantyre, where Mrs. Namalomba worked. Additional tests were conducted, and Dr. Nyirenda confirmed the severity of my condition, prescribing immediate dialysis. With limited options, I returned to Lilongwe, where I encountered a supportive team led by Dr. Mangod and clinical officer Oziti Osauka. Matron Nyirongo and Matron Rajab, along with nurses Sister Miriam, Sister Nkhonje, Sister Patricia, and student Nurse Tazirwa, played a crucial role in establishing a positive foundation for my dialysis journey.

My first dialysis session with Matron Nyirongo- using Gabro AK 200 machine

My dialysis journey began in August 2004 during that time, I met Godfrey Mkandawire (May His Soul Rest in Peace), a fellow patient who had been on dialysis for two years. It is Godfrey who encouraged me that it is possible to work whilst on dialysis and he gave me strength and enthusiasm to consider dialysis simply as a part of life. 

By then I had learned how to manage complications, including shortness of breath, high levels of potassium, urea, and creatinine, and high blood pressure, which I was managing through a low-salt diet.

Over the years, I faced numerous challenges on dialysis. Some of them, I was able to go through, but some were beyond my capacity. The lack of supplementary drugs like calcium and calcitriol tablets led to weakened bones and four unhealed fractures, restricting my mobility to a wheelchair. Additionally, a surgical attempt to address a small kidney revealed both kidneys were nonfunctional.

Due to my weakness and the difficulties in commuting to my office, where I was working as an audit assistant, I was requested to resign. Life became increasingly challenging afterwards. With no monthly salary, I struggled to sustain myself, especially with the added costs of renting a house close to the dialysis unit, travel expenses, and assistance for daily needs due to my wheelchair use.

Frequent challenges at the dialysis unit, including breakdowns of machines and shortages of supplies, inspired me and my friends Mr Chafulumila and Mr Mpelembe (May His Soul Rest in Peace) to establish the Kidney Foundation-Malawi in 2011. Our objectives were the following:

  • To identify issues in people living with kidney disease and find sustainable solutions.
  • To lobby policy makers asking them to prioritise actions on NCDs, including kidney disease.
  • To raise awareness among the general public about kidney disease. 
  • To mobilize resources to improve renal services in Malawi.

Despite the difficulties, we achieved some milestones, including the establishment of the NCDs Unit by the Ministry of Health and the installation of a dialysis unit at Queen Elizabeth Central Hospital. Kidney Foundation-Malawi, together with other stakeholders, continues to advocate for the well-being of people living with NCDs.

My life on dialysis has been a rollercoaster of ups and downs. I embarked on this journey as a working-class young man and have now been on dialysis for 19 years, somehow managing to cope with its challenges. However, the last few years have proven more challenging, particularly due to mobility issues and a lack of support in terms of transportation. The tricycle I hire to travel to and from the hospital costs me an average of $6.5 per day. I express gratitude to the Government of Malawi for offering the services free of charge.

I am now calling for enhanced awareness campaigns on kidney disease, increased resources for renal services in Malawi, and additional training for medical personnel.

Me (on the right) giving hope to Ken, a 13-year-old boy on dialysis

Disclaimer: The blog series is intended for informational purposes only and is not meant to endorse or promote any specific drug, product, or brand. Each individual’s experience is unique and should not be construed as medical advice or a guarantee of similar results for others. Always consult a qualified healthcare professional before making any decisions regarding your health and well-being.