Kidney warriors speak about their life experiences with CKD

Patients with CKD, undergoing dialysis, or post-transplant, have to deal with various issues and complications related to disease management. While health issues assume priority, dealing with work related matters, concerns about a career, managing finances, etc. are also issues that require equal attention. Being able to successfully strike a balance between all these will ensure a happy and stress-free life, keeping one motivated to remain active and productive in spite of kidney disease. 

Once diagnosed with CKD, mounting expenses are a concern as they can be a drain on one’s finances. Many patients can benefit from information regarding employment opportunities, advice from patients who have been able to manage a career while getting quality treatment for their specific condition, and suggestions on how to find opportunities to become financially independent. KWF has been sensitive to the requests from various members for information on avenues for employment. We are starting an event with a series of talks involving members who will share their experiences of how they have successfully managed and continue to manage their treatment while being employed. Some of the participants are long term transplant or dialysis patients.

Our speakers include:-

  • Harshit Bhatia, Transplant Recipient, Chandigarh
  • Naval Joshi, Transplant Recipient, NCR
  • Mujahid Naqvi, Transplant Recipent, Rajasthan
  • Samiir Halady, Transplant Recipient, Maharashtra
  • Anand Lal Banerjee, Transplant Recipient, Uttar Pradesh
  • Kamal Shah, On Dialysis, Telangana

The series will be hosted by Anjali Uthup Kurian (Kerala) and Maryann Manasseh (Tamil Nadu), both caregivers.

In the first episode, Naval & Harshit lead you through ideas on keeping busy apart from CKD and set the stage for the rest of the series, in which Samiir, Mujahid Naqvi, Kamal Shah and Anand Lal Banerjee speak about Employment & Finance issues with CKD and their solutions.

Get the details and schedule of each event on our Upcoming Events page.

Catch them Live on our FB page Kidney Warriors Foundation

HLA and Antibodies

Our third event, the first one in Hindi, was on a highly specific area related to the preparation for kidney transplantation. This episode was hosted by MaryAnn Manasseh who was joined by Harshit Bhatia, a transplant recipient and member of KWF.  In this episode, Dr. Amit Langote, Nephrologist at Apollo Hospital, Mumbai, educates us about HLA and Antibodies and the role they play in transplant. This topic which is unfamiliar to most of us is explained in easy and simple terms by Dr. Amit, who compares HLA matching to the process of horoscope matching and its importance in matchmaking before a marriage is fixed. Understand the important factors taken into consideration while deciding the compatibility of a donor kidney, why it is important to match the 6 important HLA among the 12 HLAs, and also how the presence of antibodies makes a transplantation difficult. Dr Amit guides us through the process of cross matching by providing very easy examples and gives us hope about finding the perfect match. He answers various questions regarding factors to be considered in case of a second transplant, how to avoid the increase of antibodies, and how to reduce these antibodies. To know the answers to these queries, and to know what is more important in case of transplant, a better HLA match or less PRA, watch the video below.

Insights and progressive developments in transplantations in India

The second event in our series of educational webinars on 29th August 2020, sought to educate the warriors on why transplant is the best treatment for ESRD patients. The webinar hosted by MaryAnn Manasseh, gave us an insight into the progressive development in transplantation in India. Dr. Sundar Sankaran, renowned Nephrologist from Manipal Hospitals, Bengaluru is head of International transplant services, and also founder member of various other Nephrology organizations. He explained how a transplant enables one to lead a near normal life with improved physical and mental health.

Dr. Sundar shared his knowledge acquired from 35 years of experience and described some of the interesting developments that have taken place over the years in the field of kidney transplantation. He also gave tips to take care of the grafted kidney. Dr. Sundar even touched upon the legal and ethical issues concerning the acceptance of a donor for transplant. In the second half of the session, Dr. Sundar Sankaran answered the queries of viewers. Know more about the causes of rejection of kidney transplant, the post-transplant dos and don’ts, and other common doubts with regard to kidney transplants. Is pregnancy advisable after a transplant? What procedures are involved in a second transplant? Are vaccines for Covid 19 safe for transplant patients? Watch the video below to get answers to all such queries.

Right Steps to Manage Dialysis And The Journey of a CKD Patient

KWF started its series of educative webinars on different aspects related to kidney disease, with the aim of educating patients, in order to equip them with the right information required to understand the disease, and know how to manage it. The series kick started with its first episode on 22nd August 2020, with a session hosted by our own warrior-caregiver Maryann Manasseh, who has been with us as the Voice of Patients in KWF. Dr. Avinash Ignatius, nephrologist and member of the KWF family gave a brief introduction about the setting up of KWF and its journey so far, highlighting its purpose and aims. The webinar series intends to fulfil the need to continue the activities of KWF in the background of the COVID 19 pandemic, which has put a halt to the educational events that were regularly conducted in various cities.

Our first guest speaker was Dr. Prashant Dheerendra, chief nephrologist of Dharma Kidney Care, Bangalore, a dialysis center known for providing excellent patient care.

Dr. Prashant walked us through the various stages of CKD, starting with diagnosis of the disease to dialysis, and the factors that contribute to maintaining quality of life while on dialysis. A patient will first need to accept the disease, and make certain adjustments in life to accommodate the treatment procedures, in order to live a long, happy and productive life.

Watch our video where Dr. Prashant explains these aspects in detail, to allay your fears and enable you to take the right steps at the right time to lead a positive life with CKD. When you were first told that you have kidney disease, what fears and doubts arose in your mind? Were you confused about the road ahead? Did you know how to prepare yourself to face dialysis? What issues did you encounter once you started dialysis? Questions related to these facets of the journey with CKD were raised by participants from KWF, who had the opportunity to watch the session live. If you have similar doubts and apprehensions about CKD and dialysis, watch the video below for Dr. Prashant’s responses.

In 2013, at the World Congress of Nephrology, the International Society of Nephrology made the vision statement for the world to prevent deaths due to treatable acute kidney injury (AKI). Each year there were 13.3 million reported cases of AKI, with developing countries burdened with approx 11.3 million. Working towards this ambitious project, International Society of Nephrology launched the #0by25 campaign, to reduce preventable deaths from AKI across the world by the year 2025. The aim was to create global strategies for early diagnosis and treatment of AKI among patients with reversible diseases. 

This initiative focused on bringing in infrastructure, training and education through need based projects. These were particularly designed to meet the needs of developing countries and disadvantaged populations. 

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Women across India, living in rural areas face similar issues: Long working hours, poverty, financial constraints, illiteracy, lack of proper hygiene, unconcerned husbands, and medical complications. Poverty, illiteracy and lack of medical facilities inhibit women from reaching out to the nephrologist in time, thus delaying treatment. Their faith in local quacks proves to be a major hindrance. A vital issue is the marriage of young girls who have been afflicted by the disease. Questions of who will marry them, will they survive, will they concieve? – form an endless list. KWF has started campaigns towards creating awareness amongst these women. 

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Our Foundation attempts to question patients currently engaged in some kidney treatment to arrive at some conclusions. One can safely lay the blame to low awareness of kidney disease and treatments leading to psychological, financial and sociological aspects in defining this population which needs to be published.

Analytical studies conducted by nephrologists and healthcare show that high sodium intake through consumption of packaged food with preservatives have led to Hypertension that is  responsible for most cases of kidney diseases. To curtail and manage early detection nephrologists and Government have launched campaigns, such as, “Salt  Satyagraha”, “Ek Chammach Kum” and others to limit intake of sodium and sugar, such that future generations may be saved.

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The coronavirus raised its hood in advanced countries in Europe and the United States of America sometime in December 2019. In early March, when travel restrictions were being applied, foreseeing problems in supply of imported medicines and consumables, KWF took a preemptive step to warn patients to stock medicines. 

When the Government promoted social distancing, dialysis patients found few city autos on the streets. KWF’s Sejal Jobanputra’s tweets caught media’s attention with Hindustan Times carrying a story on 23rd March with interviews of affected patients. By 24th March, complaints came from other parts of India of patients unable to reach their dialysis centers. The police were strictly following orders, immobilizing patients who needed emergency treatments.

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Nutritional Secrets, an offering from KWF is an essential Nutrition and Diet handbook for people in various stages of kidney disease. Diet and medication are inseparable in every health condition. With kidneys failing, the diet’s role gets magnified, as every small change has a corresponding effect on the overall health of the person. This handbook balances these issues. The book has been researched and developed in consultation with senior dietitians and nutritionists from various hospitals of the country. The first part of the book, DIET, explains the necessity for a balanced diet, and the function of each of its components. RECIPES, the latter part, has contributions from patients and caregivers, with easy recipes that a patient can choose from, based on his taste and nutritional requirements. It is a user and patient friendly book written with your health in mind, that will definitely be treasured by kidney patients and nephrologists.

You can read, or download the books below.

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white ceramic teacup with saucer near two books above gray floral textile

This book describes how accidentally at the age of 25, during a routine checkup Shantanu discovers that he suffers from ADPKD, a Kidney disease without a cure. How it affects him mentally to know that he may not live long, as told by his Doctor at that time. How he chooses to initially live in denial but then fight it out, making some avoidable mistakes on the way. Eventually, in spite of a near-death situation, he does conquer the disease to get back to a normal life with good health by the age of 39. The book traverses his journey in these fateful 14 years, where he did not let the disease affect his career or his daily life.

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