Advocacy - that's the mot important thing for dialysis patients today. More importantly, patients need to advocate for themselves. When diagnosed with kidney failure and the need to go on dialysis, people should not treat this like its the end of the road.
With the number of options available today, they can lead very good lives compared to what was possible several years back. And things are only getting better. We have already started hearing about wearable dialysis devices with which we can literally get dialysis 24 X 7. This is almost equivalent to having healthy kidneys.
Even today, we have many options. A transplant for me is the second best option. Behind nocturnal home hemo. And this is being supported by many researchers using scientific methods and data.
We need to do a few things to make sure Indians on dialysis have access to these amazing therapies. Lack of knowledge and awareness should never cause us to accept the 'default' that is thrown at us.
Here is what I would advice patients:
- If you have been diagnosed with kidney disease but do not need dialysis, read up as much as you can on your specific disease. Today, many drugs and treatments can delay the onset of kidney failure and subsequent need for dialysis by many years. Don't assume that your doctor knows everything. Get onto the internet and join mailing lists. There are plenty of resources on the internet. Discuss what you have found out with your nephrologist. Doctors these days are very receptive to such patients.
- If you need dialysis, DO NOT accept in-center hemodialysis without a fight. Find out about Peritoneal Dialysis and Home Hemodialysis. Ask the nephrologist to explain why he or she thinks you are suitable for any therapy he recommends and not others. Do not be diffident. This is your body and your life. There are many people doing both these therapies in India. Even on dialysis, keep reading up on the internet. Be a part of mailing lists relevant to your modality. These are excellent sources of help, inspiration and advice. Only fellow dialyzors can understand what you are going through. Not your doc, not your family, not your friends.
- Try to work. Even if for a few hours every day. Maybe from home if you are too tired to go to an office (though the ideal thing is to go to an office - gets you out of home - gives you a change). Work can be the most amazing palliative. You get a chance to think about things other than your health and associated problems.
- Do some exercise. Start slowly. Do a little every day. Do what you enjoy. For example, a game you enjoy might be easier to do than just walking. But try to do some exercise every day. This really goes a long way in keeping you physically and mentally fit.
Talk to your nephrologist of course, before doing any of the above.
Nephrologists have the most important role to play apart from the patient in the patient's overall well-being. They should really start thinking out of the box. They need to really understand what a person on dialysis goes through. One very important thing nephs do not understand is the fluid restriction. Understand that the whole concept of fluid restriction has nothing, absolutely nothing to do with thirst. Strange as it may sound, give a person on dialysis all the water that flows in the world today. At the end of it he will still want more. Only fellow dialyzors will understand this.
To summarize, what I strongly believe we need is:
Better education of patients
Providing all the choices of modality and let the patient make the final choice
Expand emergency medical management
Expand Arogyasree to cover atleast PD
Form a National Dialysis Registry
These would really be the first steps in improving the quality of life that Dialysis patients in India are entitled to.