Dialysis, daylight and dignity.

When I was eight my best friend died of renal cancer. I remember sneaking silkworms into her hospital ward where she hid them under the blankets and scared the nurses. I recall that I was a bit jealous that I had a plastic doctor-doctor set and she got to play with the real stuff. Her house smelt like medicine and there were often prayer meetings and people making promises to her desperate mother that she would be healed. I got to start school. She didn’t. I got to make new friends. She got to choose a wig. As her hospital stays increased (and there were many), people seemed to visit less and less, almost as if mothers thought the cancer would rub off on their kids. The doctors removed her kidney, but it was too late. The cancer spread to other organs and the chemo only prolonged her suffering. My mother, who never broke a rule or raised her voice, stood up to the church congregation and allowed her  take the sacraments when, in those days, kids were very much forbidden from taking part. When she died, my mom did not let me go to the funeral. They spared me, but I remember her telling me that if I look up to the clouds I can imagine Madelie with a full head of hair, running without any pain. It has been 41 years since she died, but even now , when I see her mom, she cries.

 Last year my own daughter was diagnosed with a congenital kidney condition called a UPJ obstruction and it required corrective surgery. She had three procedures and we were blown away by the incredible medical intervention she received and laparoscopic robotic surgery at Netcare Waterfall which saved her right kidney. She was so wonderfully brave and has made a full recovery.

 Over the years, there has been many interactions on a deeply personal level with me and kidneys. One of our family members donated his kidney to his sister as Lupus destroyed hers (after we watched them both battle emotionally and physically, my brother has informed me countless times that he won’t be donating any organs to me soon). By default, I got involved with Kidney Beans, an organisation that helps kids with life threatening kidney diseases. My heart broke for the parents and the kids who spend hours and days watching their blood being spun in dialysis machines. The bleakest of the units was without a doubt at Charlotte Maxeke where despair was written on every face despite the brightly coloured walls and cheerful duvets.

 What struck me was the hours wasted while the dialysis machines did their jobs. Everyone’s lives were put on hold. Kids were not able to go to schools and parents could not hold down jobs as they were at their children’s bedsides instead of going to the office. Adults requiring dialysis had to press pause on their own lives. Every part of their existence was affected by the interruption of their therapy. Although they are obviously grateful for life-saving medical miracles like dialysis, it would simply be so much better if it did not infiltrate every part of your life.

 Therefore, the invention of nocturnal dialysis solves this problem of the time spent on the machine during your work/school life. Nocturnal hemodialysis is also, according to leading nephrologists, improving patients’ quality of life and survival rates. In a study conducted by Dr’s D Ranganathan and GT John, it was proven that nocturnal hemodialysis is more effective than conventional dialysis in clearing most small, mid-sized and larger molecule toxins.

 We believe that offering this treatment is the next step we need to take at Sunninghill Recovery Lodge, to see how we can help patients receive gentler dialysis in comfort and luxury while they sleep. This way, they will sacrifice less of their time, will be able to work or study and socialise like their healthy counterparts, while we look after them and build long term relationships for their health. Watch this space!

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