Sunday, October 12, 2008

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

6 comments:

JOliveira said...

I do dyalisis since 1994, I did dylisis in hospital, I did DPCA and now I also do dyalisis at home. I know very well what you are talking about....

murtx said...

oh man, i am so in agreement to this. I am an SLE + ESRD patient for 12 years. currently had to start dialysis since a years ago again, as the steroid and meds could not control the kidney situation. Each day after dialysis is a struggle just to get back home.

i would really like to talk to you about your home dialysis experience if you have the time. please email me.

Kamal D Shah said...

Hi murtx,

What is your email id?

Kamal

Anupama said...

Hi Kamal,

Just talked to my cousin Swati in India who talked to you yesterday. Your story is truly amazing and you have given us much needed hope at this time. Sitting here in the US, all I can do is pray and read and read some more on Shilpi's current problems. From PPH to DIC to ATN to aHUS, it has been one problem after the other but she has survived it all and that is what is a miracle. We are hoping she will be healthy again and back to her super energetic self. But if on dialysis still, she has you to look up to. Thanks for the blog and thanks a million for the hope. I'll include you in my prayers too (not that I do a lot :) but every little bit helps). Thanks again.

Kamal D Shah said...

Hi Anupama,

Thanks for your comment! Please do not event think of long term dialysis right now. With enough plasmapheresis, this is a reversible process. Insist that they do enough plasmapheresis and monitor the hemolysis on a continuous basis.

Talk to other doctors if necessary.

Kamal

Guddati said...

Hi Guys,

I am thinking to start a mobile dialsis center for needy people for free of cost. I have read few stories on news papers and motivated me to do something to the society.

I would appreciate, if any body can tell us cost of dialsis center that target 3 to 5 pepole per day. Including ambulance cost. Because these people having dificulty to travel.

I am an NRI and willing to do something for my people in India.

My mail ID is guddati.s@gmail.com.

Thanks,
Subhash Guddati.