The last few decades have seen rapid advances in our understanding of kidney diseases, the extent of its burden, causes and treatment options. Yet, we’ve only scraped the tip of the iceberg in terms of diagnosis and treatment. The financial and emotional toll it can take on families is part of this reality. While research on various aspects is being carried out, the main question remains: can kidney disease be completely cured? Are we any closer to making a patient completely free from the disease?
Once a patient is diagnosed with chronic kidney disease (CKD), which is irreversible and progressive, the modes of treatment available can at best be described as palliative. I have the disease, and it has taken an extreme physical, mental and financial toll on me and my family. I have gone through all the modes of therapy on offer and have come full circle with respect to the course of the disease — and still not cured. The modes of treatment include haemodialysis (HD), Continuous Ambulatory Peritoneal Dialysis, or CAPD, and transplant from a donor, live or deceased.
Years ago I had sciatic pain in my leg, for which I underwent homeopathic treatment. A routine test showed protein leak (++) in the urine. The nephrologist took some tests to assess kidney function, and found elevated levels of urea and creatinine. He told me only 33 per cent of my kidney was functioning, and that “we can only retard it and cannot arrest it.”
There was no medication, except a minimal dose of blood pressure medicine. I maintained this for four years. Then, slowly the blood reports showed elevated levels. I was advised to put a fistula, which is an access to do haemodialysis when needed. Meanwhile I started getting low-grade fever, and various tests showed up nothing. I was treated empirically for TB, in a nine-month course. The fever persisted. The doctor felt dialysis would settle things.
The start So I started my first mode of treatment, HD. But the fever did not abate. Once dialysis started I had to continue with it; I did it for nine months.
As advised by the doctor, I started CAPD, the second mode, as it is more effective as dialysis is done all day except in the night by means of four exchanges. I developed hernia twice because of the pressure of dialysis fluid in the peritoneum and a mesh was put to prevent recurrence. The doctor then told me I should go for transplant as dialysis was not the solution. I consulted an immunologist about the temperature and he assured me it would not come in the way of a transplant procedure.
So I had a transplant, but on the sixth day there was another hernia episode, defying the mesh, which they had to repair. So within a year my abdomen was opened four times. I developed medicine-induced (steroids) diabetes. After some years I had to put a stent in LAD as there was a block due to diabetes.
Then all was fine, and I was free for 18 years. I started acquiring urinary tract infection and was hospitalised several times. Slowly my legs started swelling and I was exhausted. Again the levels in the blood went up, indicating that the transplanted kidney was being rejected. The third mode of treatment and the only remaining hope, had also failed.
Over the last two years I have had abscess accumulation in the groin and had to be operated upon twice as it was deep in the muscles. It took three months to heal. The doctor said prolonged intake of immunosuppressants could be the cause. The fistula was not working adequately, so being under-dialysed the potassium levels and BP soared. I had to rush to hospital several times in the night due to breathlessness. The fistula failed and I was put on another access called Permcath in the chest.
So I am back from where I started, having gone through all the three modes. The only hope is that some major research breakthrough will come.
malathi.venkatesan@gmail.com
