Why chronic kidney disease can affect people from all walks of life

Miracle Okon Ekpo awoke one day with swollen legs and face which, after tests at the hospital, transpired to be acute kidney disease. Then aged 17, the disease was in the early stages, “so my medical team tried to manage it for a while – about two years”, says Ekpo. “But it degenerated to CKD, which became more difficult to manage and became life challenging for me.”

“I had difficulties in breathing, my whole body was swollen, including my stomach,” says Ekpo. “And I had to go on dialysis, which was very, very painful and quite depressing. So it was at that point, I knew that I was in the CKD zone, and shortly after that I would be requiring a transplant.”

Her father and one sister quit their jobs to support her, while her uncle supported her family financially. Her older brother offered to serve as a kidney donor and travelled with Ekpo to India for the transplant. In Nigeria, treatment for CKD is expensive and must be covered privately, so she is grateful to her family for providing so much support.

“After the transplant, I realised that I had something to offer to other people, especially people in my situation,” says Ekpo. “I recently started a YouTube channel to share my transplant journey; because I noticed that people [are] interested in my case, when they look at me, it's really hard for them to believe that I'm a patient.”

“It's a project that I'm really excited about. I'm quite optimistic with everything regarding life,” says Ekpo.

Gilberto Gil has high blood pressure and received his diagnosis of CKD in 2015. As an active musician, still performing and touring in his 70s, the impacts were felt immediately, he says.

“As a musical worker, I had to drastically change my agenda. And there was a moment of adapting that was a little hard, of course.” Gil would no longer be able to travel and perform so much, but he was prepared, at this point in life, to take time out of the limelight. Although he had to cancel shows after his diagnosis, his audiences were well informed about his health.

Gil’s father had been a doctor, so he was able to think about his condition logically and adjust to the advice of his doctors. “The question was physical, not psychological,” he says.

While recuperating Gil returned to work. “Soon after the first period of treatment, I recorded an album that featured many songs that had my health situation as a subject. I wrote a song for my doctor that took care of my heart. One for another doctor that was very important in helping me to adjust to the whole thing. I judge [CKD to have had a] direct impact in the output.”

As an adolescent, Fabrice Huré was diagnosed with a genetic disease that causes kidney damage. After starting dialysis, he received a kidney transplant that his body rapidly rejected, causing him to return to dialysis.

“It was a heavy process, as I had to organise my weeks according to the dialysis constraints,” says Huré. “I worked full-time with dialysis sessions every two days from 18:30 to 22:30, returning home at 23:00.”

Five years after his unsuccessful transplant, Huré began nocturnal dialysis – staying overnight at hospital three nights each week. While leaving his family for this time was emotionally demanding, Fabrice says it saved him a huge amount of time, “and it helped me to keep my job”. He also noticed an improvement in his health and quality of life, which, as an athlete, allowed him to continue training.

Huré began with a 10km run, and within one year ran his first marathon. In 2017, he registered for a 112km race which he had to complete in less than 44 hours between two dialysis sessions. He documented his experience in a film he hopes will, inspire patients and their families at the start of their dialysis journey. “There is always a way to combine travels, passion, entertainment with the disease.”

In 2007, presenter Abigail Ashley was diagnosed with advanced CKD. “I was rushed to the hospital,” she says. “And the doctor was surprised to see my blood pressure levels, and they just told me [to have] a kidney transplant, to go on the dialysis machine, because it wasn't looking good.”

Ashley visited the other dialysis patients and was shocked by what she saw. One patient explained to her that though he needed dialysis he would soon have to stop. “He couldn't get any more money, so this man couldn't continue on the dialysis,” she says.

From 2007 to 2017, Ashley managed her condition by changing her lifestyle. She found this period challenging because she was limited to 500ml of fluid each day – Ashley would take long showers to try to stay cool in hot weather without drinking water. But her condition deteriorated “and then the doctor said, we have no option but to go on dialysis” says Ashley, before she received a transplant in 2018.

Her experience inspired a slight career change. In 2007, Ashley mostly reported on politics. Now she uses her platform to talk about a range of health issues.

Although she lives an active lifestyle, Jane DeMeis admits she has struggled with her weight at various points in her life. In the early 2000s, DeMeis was diagnosed with arthritis after feeling pain and a loss of energy. Her doctor advised her to lose weight and prescribed daily painkillers (at the time it was not known some painkillers could increase the risk of CKD).

In 2016, following a stressful period of work, her weight increased. DeMeis was diagnosed with diabetes and in the following years developed kidney stones which further damaged her kidneys. She was referred to a renal dietician – a specialist in diets for patients with kidney disease – who DeMeis says “was lifechanging”. DeMeis changed her diet, losing 16kg (35lbs) in the process.

Now as a patient advocate, she wants to share that it is possible to manage kidney disease with the right advice. “The most important thing is for patients to connect with other patients who have walked the walk,” says DeMeis. “Having lots of help and support from other patients will help you ask the right questions when you see a doctor.”