A Fast Descent

Shahada’s story, part one written by Cabral Opiyo

Estimates show that 4 million Kenyans have chronic kidney disease with a significant proportion of this population progressing to kidney failure. “Out of these, about 10,000 people have end stage renal disease and require dialysis, yet only 10% of those who need dialysis are able to access the services,” according to the cabinet secretary for health.

For most people, a kidney disease diagnosis is damning enough without the added complications that come with it. One in every six kidney disease patients die in Kenya, a reality that Shahada had to confront head on when her mother was diagnosed with kidney disease and other co-morbidities. As we end national kidney month, we tell the tale of Shahada’s journey caregiving for a kidney disease patient.

In July of 2016, Shahada’s mum started complaining of incessant back pains that were so bad that she couldn’t sit or lie down, she had to stand to get even a smidge of comfort. Of course they went for all the x-rays and enlisted the help of competent physiotherapists to no avail, the back pains just kept worsening.

A month later, her mum’s condition reached a breaking point one day when she had to stand on her feet for twenty four hours without attempting to sit or lie down. When they took her to hospital and sought a second opinion from a different doctor, tests showed that she had acute kidney disease and she had to be rushed for emergency same-day dialysis. Things were escalating and Shahada had no idea just how fast her mother’s health was going to deteriorate afterwards and she would witness everything as she was the primary caregiver since her father worked thousands of kilometres away and her brothers were in boarding school and too young to take on the responsibility.

For the next few months, her mother had to be taken for dialysis three times a week, an expensive and time-consuming venture as there are very few affordable facilities in Nairobi and the lines every morning are prohibitive.

In November, Shahada’s mum could still walk although she was weakening rapidly and Shahada had to move back home and stay with her mum to better take care of her. When the pain was not lessening, she again took her mum for an MRI and that’s when the second shoe fell, her mother had a tumour on her spine and they were quickly sent to the cancer centre for more tests. At this point, her mother was seriously weak and could barely walk yet Shahada’s nightmare was just beginning.

The news from the oncologist was even more devastating; her mother had multiple myeloma and her cancer had spread. In multiple myeloma, cancerous plasma cells accumulate in the bone marrow and crowd out healthy blood cells. The images showed the tumour pressing on the spinal discs where it was growing and further impeding nerves that controlled movement.

As they were leaving, the doctor called Shahada back to his office and dropped a hammer blow. Her mother had stage four bone marrow cancer and since she also had a pre-existing kidney disease, she couldn’t undergo surgery without full recovery. Therefore, there was little that could be done for her mother except to manage it and the diagnosis was that her mother only had six months to a year left to live.

Ever the optimist, Shahada refused to take the news at face value and was determined to fight and they started radiation immediately and thus, a routine was established. As the primary caregiver, Shahada had to be there for all of the ten radiation sessions which included a session followed by a three day break until the sessions ran out. They also started chemotherapy but just for management purposes rather than to treat the cancer.

Shahada’s life was no longer her own, it revolved around getting her mother around to her various medical appointments and taking care of her. She fully moved out of her marital home where her husband and one year old son still resided to take care of her mother at home. They would wake up at 5 a.m. and rush to the hospital for radiation therapy where they would find long lines and wait for their time slot at around 9-10 a.m. Afterwards it would be another dash for dialysis in the afternoon and finally back home. Most of the time, this gruelling schedule would be kept without having taken any breakfast in the morning and barely having time to groom herself either because being late meant missing out on a session completely.

Her mother lost all ability to walk by herself and a friend gave them a wheelchair which made the task of moving her around much easier. When paralysis set in, it was up to Shahada and her brothers to lift her mother on a Masai shuka up the stairs to her room and down to the wheelchair every day. Did I mention that Shahada was several months pregnant during the thick of things?

Hiring a nurse was never on the agenda for Shahada because it was too expensive and as such, she had to attend to her mother’s more intimate needs as her brothers could not help in this aspect. She changed her mother’s diapers, cleaned her and changed the catheters.

Shahada remembers thinking that the paralysis was temporary and that she would be able to move back home once her mother got better, she had no idea of the rollercoaster her life was about to become. Her mother was constantly on morphine and at times the pain got so bad, Shahada and her brothers could not sleep either as they massaged and tried to attend to their mum’s needs as she lay in bed moaning. They felt the pain on an intimate and personal level and yet there was nothing much they could do about it.

By the time April and Easter rolled around, her mum was depressed and refused to talk to anyone. She refused to communicate, eat or open her eyes and it was like she just shut down according to Shahada. They rushed her to hospital again when she developed a rather bad cough and she was diagnosed with a chest infection. She had difficulty breathing and started passing out regularly, all of this was attributed to an electrolyte imbalance.

The whole weekend was spent going back and forth to hospital as different issues emerged until high cretin levels were detected and she had to be put through an emergency dialysis. It was at this time that she started having seriously cold feet and started shivering violently until a friend lent them an electric blanket to keep her mum warm, an episode that would bring further complications. Shahada and her brother who slept in the same room as their mother to be able to turn her at night did not know about the regulation of the electric blanket’s temperature, an oversight that caused their mother to sustain burns on her legs up to her thighs. If there hadn’t been a black out in the middle of the night, the consequences might have been fatal.

Back to hospital they went and she was additionally diagnosed with pneumonia and Shahada states that her mother started being hysterical and screamed anytime anyone tried to feed her. Shahada could only watch in despair and helplessness as her mother was forced into admission and later fell into a coma and everything appeared hopeless.

In part two of this four part series we will explore the damage being a caregiver did to Shahada’s relationships and especially her marriage and any advice she might have for caregivers who are trying to juggle caregiving with other relationships.