On March 2, 2024, MOHAN Foundation organized a Patient Support Group Meeting at ‘The Comfort Inn Heritage Hotel, Byculla (Mumbai)’. It was attended by 43 participants comprising Kidney transplant recipients, liver transplant recipients, organ donors, those on dialysis and caregivers. Some of the participants travelled from far away places like Beed, Jalgaon and Nagpur in Maharashtra.
The meeting began with an open mike in which attendees were encouraged to introduce themselves and share something special about themselves. Some of TRIOMPH’s members spoke about how theymanage to keep themselves physically fit through exercise or yoga or walking routines, while some others shared about their challenges in building up their career, mental health challenges, travelling after transplant, travelling while on dialysis and thus each one had a special story to share. One of therecipients, Kishor Suryavanshi sang a song dedicated to Organ donation, while he strummed the guitar and got everybody to sing along with him. It was an interesting event and was extremely motivating tohear each share their own experiences and personal journeys.
Mr Kamal Shah, the Co-founder of Nephroplus and who has been on dialysis since 26 years, was the first invited motivational speaker, who spoke on ‘Taking charge of your Life’. Mr Sudeep Pathak, a liver transplant recipient, then spoke very well on ‘Living Well after a Transplant’.Here are the video links to the Motivational Talks –1.2.This was followed by a Panel discussion on ‘Living well & Living Long’ – For Organ Recipients and Donors. The panelists included the following experts - Dr Ravi Mohanka, HPB & Liver Transplant Surgeon Dr Divya Bajpai, Nephrologist Dr Subha Murthy, Kidney Recipient of 20+ years post-transplant Ms Mahewish Khan, Liver Donor who donated portion of her liver to her mother at the age of 21years Mr Naresh Vaidya, a Liver Recipient Ms Deepa Talib, a Kidney DonorMs Jaya Jairam, Project Director MOHAN Foundation and TRIOMPH Lead set the tone for the PanelDiscussion by sharing that India was one of the highest transplanting countries in the world andtherefore the need for discussions on how one can live well after Transplant and after donating a kidneyor a part of the liver. Following points were discussed at great lengths –Q to Dr Divya Bajpai: Why are kidney patients, especially younger ones hesitant to explore the option of kidney transplants?
Q to Dr Subha Murthy: Kidney Transplants offers a much better quality of life; however it is not a bed ofroses – please comment to Dr Divya Bajpai: Have modern treatment with current medications and induction therapy helped improve the long-term longevity of kidney graft and is the literature available on internet out dated when it speaks of an average of 12-year survival of kidney graft?Q to Dr Divya Bajpai: How do we collectively, as a Support group and with Nephrology Association,combat unproven alternative treatment and medicines claiming to cure kidney disease?Q to Deepa Talib: How are doing after donating your kidney and how do you keep yourself physically fitand mentally agile? Are you undertaking annual health checkups? How did your family react when you considered donating your kidney?Q to Dr Divya Bajpai: Share your insights on long term outcome after kidney donation. Have there been any Indian studies on this subject, as we, as a nation, are more prone to diabetes and hypertension, andour nephrons smaller than the white population? Q to Dr Divya Bajpai: 15% of kidney transplants in the US are through SWAPs – Why hasn’t this taken offin India? Are any steps being undertaken by the Government to create a National or State Level SwapRegistry?Q to Mahewish Khan: How did you decide to donate a part of your liver to your mother at such a youngage when boys and girls your age are still finding the meaning of life? Did any family member oppose your decision? Q to Dr Divya Bajpai and Dr Ravi Mohanka: It is possible for us as a group to undertake studies alongwith Nephrology Association and Liver Transplant Society of India, to arrive at outcome data in recipients and donors, so that we can work with Insurance companies to develop Insurance products forthis community?Q to Dr Ravi Mohanka: Is it a myth or a fact that Organs from Living donors do better than organs from cadaveric donors? What are the key questions that a transplant candidate must ask when offered a kidney or a liver?Q to Naresh Vaidya: You received a liver from a deceased donor. How many years has it been since thetransplant and how do you manage your corporate job and its demands? Q to Dr Ravi Mohanka: Is there any alternative to taking steroids lifelong? Is it prescribed life long because we live in a developing country which is prone to infections? In other developed countries, Iread that patients are taken off from steroids after initial years.Q to Dr Ravi Mohanka: Are any alternatives to immunosuppression being developed?
Many questions were asked by the participants to the panelists. The event was highly appreciated by all participants.The feedback by some of the participants was as follows –“Every moment I stood there watching, listening and every word that got spoken, discussed, or sung,stirred something inside. Each moment gave a glimpse of what life is and what life can be. It is indeed abeautiful world. A world filled with beautiful people, all heroes of the stories they shared”– A kidney recipient“ Firstly, thank you so much for the invitation to the Support Group meeting program. It was quite informative, well organized and had so many positive and motivating vibes. Looking forward to the next program…”– Mother of a kidney recipientWe thank SBI Foundation for supporting the Patient Support Group Meeting event under ‘Project Gift Hope, Gift Life’.
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