Author: Jaya Jairam

Leading a normal life on dialysis

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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.

From the eyes of a Caregiver and Mother

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By Suma Nuggihalli

April, 2018

It had just been a week since my daughter Shreya’s twentieth birthday and unlike her nineteenth, she had managed to cut cake with her new hands. This was a baby step and yet, it was so satisfying and gratifying to watch her do it all by herself.

“Shreya has PTLD (post-transplant lymphoproliferative disease), a life-threatening complication that arises after solid organ transplantation”, were the sombre words of the oncologist and this diagnosis shattered me. Shreya had already battled 7 rejection episodes, cytomegalovirus colitis and a bad fungal infection in the liver. It broke my heart to see her in agony. How much more, I asked God. We had to admit her again for treating PTLD.

Shreya wouldn’t eat much during the antibody therapy. She kept throwing up whatever she ate. All she would eat was one chapatti with some jam and 2 small bowls of curd, in a day. She was growing weaker day by day.

Even after a month-long antibody therapy, 90% PTLD was still present, indicating that Shreya’s body had not responded to the treatment.  There was a point when doctors told us that if ever the question of deciding between keeping her hands or her life were to arise, they would amputate her forearms again to save her life. The thought of amputation and all the unpredictability scared me. It was our fond hope that the new hands would give her freedom and confidence, arising out of her ability to be self sufficient with her needs, thus giving back to her, a dignified life. I just couldn’t afford to let the negative thoughts takeover; this was the time when I had to be brave and I had to keep it going, for my daughter sake. She was extremely dejected. I became her psychotherapist, counselor and motivator.

She was put on a few other medicines to treat PTLD and when she would undergo rehabilitation for her hands, I would sit with her for hours together. It was a slow process and she needed to gain more functionality in her hands. I wanted her to realize that if she made up her mind, she could defeat PTLD. The book by Dr. Joseph Murphy, ‘The Power of Subconscious Mind’ became our favorite book. I would read a few pages from this book to Shreya before she went to bed, every night. We would watch food vlogs and TED talks on YouTube to keep our minds diverted and positive.

I believe in positive affirmations and every day I would write in my journal that Shreya is perfectly healthy. It helped me visualize her that way and in turn, helped me to stay positive. This was important because, only if I stayed positive, I could pass on positivity to her. As her mother and her caregiver, I wanted her to remain motivated and stay positive. Two months later, Shreya underwent another endoscopy and she had defeated PTLD. Looking back, this was a very important milestone because, after PTLD, her hands showed tremendous improvement in terms of functionality. She could now go to the bathroom by herself, after being dependent on me for 2 long years. The happiness on her face showed me how worthy it all had been – fighting the society that had stigmatized her, the various infections that tormented her post-transplant and the countless hours that we spent in rehabilitation.

During the lockdown this year, Shreya tried her hand at learning basic cooking and stitching too. This has further improved the dexterity in her hands. Shreya undergoing hand transplant has truly been life transforming for me as well and my only wish is that I want her to lead her life the best way that she can and for as long as possible.

Thoughts on my 3rd Transplantversary

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By Shreya Siddanagowder, Bilateral Hand Transplant recipient

9th August, 2020

The toughest thing in the world is to see yourself beyond what other people think about you; but if you are able to do it then it’s the most beautiful thing you will ever experience.

Four years ago, I was lying on a hospital bed with both my forearms amputated and my stumps, bandaged. My entire right leg was in a cast, my abdomen was filled with bruises and abrasions but my heart ached way more than my injured body.  “People like Shreya are so scary to look at”, remarked a visitor unsparingly. That sentence stung me and for the first time, I felt inadequate.

It has been 3 years since my hand transplant and I don’t feel inadequate anymore. Losing hands was supposed to be a permanent loss, but it was not so in my case. I can even hold a 30 second plank. It feels amazing to see that my transplanted hands can take my body weight and I still have metal implants in my arms! I have even written my semester exams with my transplanted hand. This was an unexpected achievement by any hand transplant recipient. When I had decided to embark on this journey of hand transplant, I did not know to what extent my transplant would be successful. Hand transplants are relatively new, rare and the advancement is still being understood. As the level of transplantation (above elbow in my case) was higher, I needed longer period of rehabilitation, tremendous patience and commitment.

It has literally taken blood, sweat, tears, pain and countless hours of therapy for my transplant to become successful, but all that has been totally worth it. It is liberating to be independent again. Your body can tolerate almost anything; it’s your mind that you have to convince. People always focus on what is going on below the neck so much that they often forget what is above. It is always mind over body. This was possible because of my donor and his parents, who decided to donate their son’s organs during their grief. He is still alive through 7 people, including me. They have given me a second chance in life and I am going to live it the best I can, for as long as I can.

‘’He who has a why to live can bear almost any how” – Friedrich Nietzsche.

This quote has resonated with me and I would always say this to myself on the days when I felt dejected and demotivated. Today, without any doubt I can say that I love myself because, I am mentally stronger and tougher and no accident could take away my will power, grit and determination. However bad your current situation may be, life eventually gets better and trust me when I say that because this is coming from a girl who, a few years back, was lying on a hospital bed without forearms; but today she has hands and is independent again. The last three years did give me a little perspective and the courage to see myself beyond what people thought about me.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in” – Haruki Murakami

Coping with Kidney Disease – on Peritoneal Dialysis

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By Shruti Mukundan, Peritoneal Dialysis Patient

MY NEW NORMAL: LIFE ON PERITONEAL DIALYSIS

“The first step towards getting somewhere is to decide you’re not going to stay where you are.” 

~ JP Morgan

When one is dealing with a chronic disease, one learns to celebrate small victories and every setback helps you become a stronger person.

After multiple vascular access failures, I had serious apprehensions for next access. A well-wisher suggested that I try peritoneal dialysis. I was skeptical, but since I had no real alternatives, I decided to explore this option.

I decided to meet Dr. Georgi Abraham and his team in Chennai. After they found me fit, I was operated upon and in a couple of weeks, my dialysis started. I got excellent training by a peritoneal dialysis technologist and I was ready to go!

The training included everything from sterilising the peritoneal dialysis space, washing of hands, cleaning the catheter site, dressing to giving oneself injections.  Only after the team is convinced that the patient has understood the process clearly, that he/she is allowed to do the peritoneal dialysis independently.

Today, I have completed more than 6 months on CAPD (Continuous ambulatory peritoneal dialysis). I do three exchanges a day and try and lead an active life.

I highly recommend peritoneal dialysis as I have noticed positive changes ever since I started it. I have fewer blood pressure crashes, my parameters are stable and I have less fluid and dietary restrictions. The best part about peritoneal dialyis is the independence it gives and the confidence it instils in you about taking your health and care in your own hands.

During these uncertain COVID times, Peritoneal Dialysis comes as a boon, as you can do the dialysis at home. If a person is unwell, the caretaker can do the dialysis for them. Discussing with your physician and exploring the option of peritoneal dialysis seems to be a great way to resolve the issues of shortage of dialysis beds, infrequent dialysis and frequent hospital visitations.