My home hemo journey - Part 1

(Cross posted from Home Hemo training in India)

After the tsunami, in less than a year I was off PD and back on hemo in the hospital. I hated hemo in the hospital. Here's why.

Hemodialysis in a hospital is done twice or thrice a week and for each time between three and five hours. Compare this with the functioning of a kidney. A kidney functions seven days a week and 24 hours every day! So, this kind of dialysis is woefully inadequate.

Because of this intermittent cleansing of the blood, dialyzors (I prefer this term to ‘patients’) undergo a yo-yo effect. Continuous ups and downs. Once a dialysis session is done, your blood is somewhat clean and the excess fluid is removed. But until the next dialysis session, life is a constant struggle. Drink less water. Watch your potassium. Don’t have too much fruit.

The energy levels are horrible. After a dialysis session, dialyzors feel a ‘crash’. This is a term loosely used to describe the horrible feeling after dialysis. You feel weak, tired, listless. Completely drained. I could not do anything after dialysis. I had to go and crash on the bed and doze off.

I had a full time job during this period. But I could not do much. I spent less hours at work. Even when I was there, I would not feel like doing much. It was really terrible.

I am that kind of a person who does exactly what he is advised not to. I guess many of us are like that. If the doctor restricts our fluid intake, fluids are all we want to have. I suddenly started craving fruits and liquids like crazy.

My weight gain between treatments would be a minimum of 4 kgs. Removing 4 kgs in a span of 4 hours can be pretty taxing on the body. The maximum rate of removal of water from the body that can be tolerated by us is 400 ml/hour. There are a number of sites which explain this in more detail. But when you’re removing water at the rate of 1 kg/hour, it can be very bad. The ‘crash’ after dialysis is chiefly due to this.

I understand doctors asking us to limit our fluids. But believe me, dear doctors, this is not something we’re doing intentionally. This is all about human nature. The human mind craves what it is forbidden. Please, please try this out yourself. Just for the heck of it. Just so that you understand what your patients are going through. For a week, restrict your fluids to a liter a day. And then see what happens. Don’t even undergo dialysis. Don’t even restrict your fruits and other things that we need to restrict. Just try the fluid restriction for a week. Let me know how it goes.

The dialysis process itself was horrible. Lying down in the bed for 4 hours without having anything 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 whole experience can be quite distressing.

I would be lucky if I got an hour or two of sleep. And the rest of the time would be just waiting for the whole damn thing to finish. Continuous looks at the watch. Time would move so slowly, it was almost as if the whole world has slowed down.

And I had to go through this torture just to be able to live. What kind of a life was this? Is this kind of a life really worth living?

There is a fellow dialyzor in the US called Stacy (without an ‘e’). He described it very beautifully when he said that dialysis had killed a part of his soul. This is so true. That is exactly what I felt.

Part 2