I have never longed for someone’s death so desperately. Not that I hated that person but it was difficult to see her going through so much pain everyday. That person was our late aunt, who had been with us for 25 years, and was like a mother to us.
My aunt led a healthy lifestyle. She was fit, active, and hated junk food. She was well aware of the effects of alcohol, smoking and doma chewing. So she never indulged in any of these. However, the beginning of 2019 took our family by surprise when she was diagnosed with chronic kidney disease (CKD). Having covered several articles extensively on CKD as a former journalist, it was a big blow for us since she neither had diabetes nor hypertension or alcohol liver disease, the leading cause of CKD globally.
When a person is diagnosed with CKD, also known as end stage renal failure, the only option left is either transplant or dialysis. Dialysis treatment is a process where the function of a kidney is replicated by a machine. The machine removes body waste by pumping a patient’s blood into the machine, filtering the toxic substances, and sending it back into the body.
My aunt’s case being quite peculiar, she was admitted for almost three months after her diagnosis. The doctors worked hard even to the extent of sending some lab reports abroad in determining the cause of her kidney failure. Finally, they concluded that it was hyper-eosinophilic syndrome (HES) in her case. HES, according to the Mayo Clinic, is a group of blood disorders that occurs due to high numbers of eosinophils — white blood cells that play an important role in the immune system. Over time, the excess eosinophils enter various tissues, eventually damaging the organs. In my aunt’s case, it damaged her kidneys. HES is a very rare disease with not much research done on it. We were glad that the doctors at the Thimphu referral hospital didn’t give up easily for we were equally curious.
My aunt was on medication and dialysis. For someone who rarely got sick, it was quite a pressure on her. Yet, despite all odds, we wanted her to recover and come home. So was her desire. Her hospital stay prolonged given the multiple infections as her immune system deteriorated a lot. After almost three months, she was discharged. She came home and continued dialysis. None of our blood groups matched so seeking a donor was the only option but a challenge. As we waited for her to regain her health, she was then diagnosed with bone TB. A week after she started her TB treatment, she suffered a brain stem stroke. She was admitted again in August with a Glasgow Coma Scale (GCS) of 3. The GCS is the general level of consciousness in patients with brain injury. The GCS is divided into 3 categories – eye opening, motor response, and verbal response. A GCS of 3 is considered severe injury to the brain.
Two weeks later, her GCS improved. She could hear us and responded through gestures. She remained in a minimally conscious state for about three weeks. That was most difficult time. For us as well as her. She couldn’t talk but could feel the pain. She wanted to talk but couldn’t do so. Tears trickled down her cheeks sometimes. We watched helplessly. When someone died in the ward, she could sense it as she heard the relatives wailing and she wept again. We weren’t sure if she would recover or would remain in that state for how long. We had a difficult time, physically and emotionally. Yet we had to be strong for her as well as ourselves.
On 5th October she left us. A week before her death, she went back to coma again with a GCS of 3. It was as if she was in a deep sleep. We knew she was dying and we had no choice but to brace up. She was only 50.
It took a while for us to come to terms with her death. And for me to write this article more so to create awareness especially among those who are more vulnerable to Non-Communicable Diseases. My three-year-old son still believes that Ama, as we all call her, would be home someday from the hospital.
Records show that from eight cases in 1998, there are about 171 patients on dialysis and 123 kidney transplant recipients in Bhutan today. CKD is a major burden on health, as a majority of the referrals to India comprises kidney failure transplant. The government funds the transplant that is done in India when a patient finds a donor. For every transplant, the health ministry spends millions of Ngultrum on referrals to India.
When the government gives in so much in the form of free health care, it becomes imperative for the people to be more responsible. The least we can do is to take care of our health. This itself is a big contribution. Therefore, it is better late than never. When CKD can strike a perfectly normal person, those who lead unhealthy lifestyles are even more vulnerable.
The writer is a former journalist with Kuensel and now a corporate employee