By Kamal Shah
Kamal D. Shah has been on dialysis since 1997. He writes about his journey in his blog which can be accessed at www.kamaldshah.com. He is the co-founder of NephroPlus, India’s largest dialysis centre network.
Being diagnosed with kidney failure is like being hit by lightning. It is sudden, you are never prepared for it and it can be a huge shock. Many of us have no idea what dialysis is, until we are put on it. We might know some distant relative or friend who was on dialysis or have recently heard of some powerful politicians who have had to endure a few sessions and were amused at the hullabaloo around a few sessions when we have been told we have to continue like this for the foreseeable future.
It might then come as a surprise, disbelief even, to be told that you can actually lead a normal life on dialysis.
How in the world, you think, can anyone possibly be happy and normal, whatever that may mean, with this ghastly treatment that involves two thick needles twice or thrice a week and where even something as simple as water, nay, not whiskey or rum, mind you, but good old water is restricted to a litre a day?
Dialysis has not stopped several people from leading lives that they were meant to lead hadn’t dialysis come in the way. Take Maddy Warren. Diagnosed with kidney failure at a very young age, Maddy did not let this disease beat her. She ran the London Marathon recently and goes sky-diving when she is bored. Yes, she’s still on dialysis.
There are a number of things that you can do to enable you to lead a life that can be fulfilling, productive and happy. Long as well, if you wish.
Healthy kidneys work 24X7X365. No holidays for them. No weekly offs. No Diwali, no Eid.
What is dialysis? It is a replacement for kidney function. During hemodialysis, the dialyser (which is an artificial kidney) is doing some of the job that the kidneys are supposed to be doing – removing excess fluid and toxins from the blood. So, ideally, you should be connected to the machine and let the dialyser work on you 24X7X365.
That is obviously hardly practical. So, what do we do then? We need to reach as close to the ideal as possible. Dialyse as much as possible. It is not that difficult to understand. The greater the number of hours you spend on the machine, the better it is for you.
Look at your practical situation. How many hours can you spare? How much money do you have? How many sessions can you afford? Keeping all this in mind (and of course, your nephrologist’s advice), pick the highest frequency and duration that all these considerations permit. Don’t skimp on this. Please. Trust me on this.
If you reduce your frequency and duration, you are short changing yourself in the long run. Forget normalcy.
The next thing to keep in mind is exercise. Move. As much as possible. Run, if you can. Walk if you can’t run. Start small. Slowly increase. Keep your doctor in the loop. Take up a sport. Badminton, Table Tennis, Swimming, anything you enjoy. If you pick cricket, be careful – you don’t want to hurt your access with those cork balls.
Do strength training. With years of dialysis, the muscles start wasting and the bones become weak. Nothing unmanageable. A few months of strength training for the arms and legs can make a world of a difference. I write from experience. This one thing will transform your life.
Work. Do something. Keep that mind busy. Work full time if you can. Part time at least. If you are not used to taking up a professional role, then do something at home. Cook, clean. Take up a hobby, if nothing else.
You need to have a purpose. Something to look forward to, for which you get out of bed each day. Dialysis is not motivation enough, I assure you. No one gets out of bed thinking, “Yes, today is my dialysis session. I can barely wait for those thick needles.” You need something else.
So make sure you have something to keep you busy for most of the day.
Many people get frustrated with their diet restrictions. I say, don’t. Take it easy. Don’t punish yourself. I feel it is better to cheat once in a way rather than feeling like ending it all just because you can’t have a slice of a mango during the summer. Do thrice weekly sessions and you can eat practically anything in moderation. Talk to your dietician and nephrologist about foods you would like to include. Find ways to incorporate your favourite foods and stop craving them. I used to dream only of water melons when I was first told “No fruits, no water”. I found ways to have some water melon regularly.
Be positive. If you are feeling low (everyone does, even the healthiest of people do), watch some comedy on YouTube. There’s plenty of stuff there. Surround yourself with cheerful friends. Go out for a meal. Go, enjoy a movie (assuming COVID is no more!). Go for a swim. Go play a game of Table Tennis or whatever you like. Dialysis should never stop you from doing anything. You can lead a full life. You can lead a normal life. You should not let dialysis come in the way. Look at dialysis as something you need to get done with and then get on with the rest of your life. Treat it as akin to going to a gym to lose weight. Never let dialysis become your entire life. Let it only be a small part of your life.
Watch this Video in which Kamal Shah talks about his life & dialysis and has given tips for patients to better their lives. Let’s watch and learn.