How Kamal Shah worked on improving the experience of dialysis and built a business in the process

I was not happy about haemodialysis in the hospital.

Most patients undergo haemodialysis in a dialysis centre thrice a week for between three and five hours each time. In India, most people get four-hour sessions twice a week. Only about a third do it thrice a week. Compare this with the functioning of a kidney. A kidney functions seven days a week and twenty-four hours every day. So, this type of dialysis is inadequate.

Because of this intermittent cleansing of the blood, patients undergo a yo-yo-like effect. Continuous ups and downs. Once they complete their dialysis session, their blood is partially clean, and they have got rid of the excess fluid. But until the next dialysis session, life is a constant struggle. Drink less water. Watch your potassium. Don’t have too much fruit.

Energy levels are horrible. After a dialysis session, patients feel a “crash”. This is a term used to describe the horrible feeling after dialysis. You feel weak, tired, listless and drained. I could do nothing after dialysis. I would lie on the bed and doze off. Though I continued working at Effigent, I could not do much. I spent less time at work. Even when I was there, I would not feel like doing much. Life was a struggle.

I was a non-compliant patient. I guess many of us are like that. If the doctor restricts our fluid intake, fluids are all we want to have. I started craving fruits and liquids like crazy. My weight gain between treatments would be at least 4 kgs. Removing 4 kgs in four hours can tax the body. The crash after dialysis is because of this.

The dialysis process itself was horrible. Lying down in bed for four hours with nothing to do can be very frustrating. With every passing minute, you feel worse because fluid is being removed at such a high rate. All around, you see people feeling miserable. The entire experience can be quite distressing.

I was lucky if I managed to get an hour or two of sleep. The rest of the time would be spent just waiting for the session to finish. Time would move so slowly. It was almost as if the entire world had slowed down.

Around September 2005, I became severely anaemic.

Dr Narayen upped my erythropoietin dose. I also had to take iron injections intravenously. But the anaemia persisted. We then got some more tests done. Nothing seemed unusual. We even got the bone marrow analysed by doing a bone marrow aspiration. That result also was normal. We consulted a haematologist on Dr Narayen’s recommendation. He could not offer us any more answers. I also developed a persistent cough around this time. X-rays and other regular tests yielded nothing significant.

The nephrologist at KIMS, Dr VS Reddy, suggested I get an echocardiogram. The echo showed I had left ventricular hypertrophy. This is a condition that dialysis patients get because of the constant fluid overload in their bodies and the rapid fluid removal during the four-hour sessions.

Dr Girish Narayen asked me to see a cardiologist. The cardiologist put me on medication for the heart. These were all side effects of the regular, in-hospital thrice-a-week dialysis regime. Not having the body’s native kidneys can cause so many problems. No one realizes that the kidneys contribute so much to our well-being. Not having them function can affect every part of the body.

It was clear that hospital-based haemodialysis was taking a toll on me. Mentally, I was feeling horrible. And then, it had also affected my heart. While I was continuing to get haemodialysis at KIMS, my primary nephrologist continued to be Dr Girish Narayen. I would visit him regularly for a review. On one such visit, realising that I was unhappy with regular haemodialysis, Dr Narayen suggested that I try daily home haemodialysis. I asked him how anyone could do that. He explained that one needed to set up a machine at home and then carry out dialysis at night.

Frequent, longer duration dialysis provides for an excellent quality of life. I went home thinking about this new thing that I had heard. How could anyone do haemodialysis at home?

I started looking it up on the Internet and found a lot of positive things being said about this modality. I started digging deeper. I found people on the Internet, especially through a website called Home Dialysis Central, who were doing home haemodialysis. Many people spoke about it in glowing terms. Their life had changed after switching to home haemodialysis. There were several posts on mailing lists and forums on the Internet.

It appeared that daily, nocturnal dialysis – seven to eight hours every night, five to six nights a week – offered the best outcomes in terms of well-being, longevity, minimising co-morbidities (side effects of kidney disease like heart conditions, etc). The next best was short daily dialysis – two to four hours every day, six to seven days a week). The worst was the four-hour, thrice a week regimen.

One major advantage of doing home haemodialysis in the US was the availability of the NxStage System One machine. This was a portable, small-sized machine, specially designed for home use by patients themselves. The machine was not available in India. While I could not find any references to daily home haemodialysis being done in India, I found that there were a tiny number of people doing dialysis at home. But those were only the regular, twice- or thrice-a-week sessions. They used the regular, large, hospital machines. Also, in the US, the infrastructure to manage emergencies was excellent. In fact, some centres also had online monitoring of the dialysis treatment performed at home.

Here, in India, of course, no such infrastructure was present. That was one risk. But I thought I could get a dialysis technician to come home and do the treatment for me. The dialysis technician at KIMS, the hospital I was undergoing dialysis at, was an expert at his work.

I thought this through from various angles. I thought about the pros and cons. There was no one I could contact who was doing daily dialysis in India. So, I could not get first-hand information about the Indian situation. This was quite unnerving. I realised I did not want to continue the way I was receiving treatment. I could not tolerate my current treatment regimen and needed a better life.

I decided to go for it.

Excerpted with permission from Silver Lining: Overcoming Adversity to Build NephroPlus - Asia’s Largest Dialysis Provider, Kamal Shah, Penguin India.