Kidney Matters - Issue 16 Spring 2022

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28The arrival of our lightFEATURE INTERVIEWWhen a loved one starts dialysis, not only does it impact their health. Day-to-day life,other relationships, cultural and religious festivals, and spirituality are just a few thingsthat are also affected. Vanessa Patel talks about her family’s journey from dialysis topost-transplant and everything in between.How it startedMum’s kidney function levels had been dropping forseveral years, but she was still leading a good life.However, Mum’s kidneys deteriorated quickly. We sawthe impact.She was getting increasingly tired, not sleeping wellat night, and developing rashes. Mum was very upset,and we saw my dad’s wellbeing also suffered - he lost alot of weight - but Dad is strong and practical and justsupported her.He said, “Although it was on the horizon, I was sad andupset for my wife. I am retired and, therefore, we wereplanning on having a fulfilled retired life, travelling, andspending time with our eight grandchildren. So, wewere facing a big uncertainty.”Vanessa and her mum after the transplantfamily holiday to DubaiMum decided to have peritoneal dialysis (PD) at home.This meant she would be free during the day. She said,“I could have my normal routine of going to the gym,shopping, seeing family and friends. But of course, thisall stopped as I was shielding from March 2020. I wasvery frightened in the early months of the pandemicand what it meant if I was to catch Covid-19. However,I relied upon the support of my family and the videocalls I received daily. My family even organised anonline cocktail party for my birthday, which was lovely.”My dad is very organised, he took care of her dialysissupplies and hospital appointments. He said, “Ihave continued to support my wife by chasingappointments, organising, and checking all the rightmedication for my wife is available. If I can do anythingto lessen the burden on my wife, I will. I have learnt howto do many household chores too.”My decision to donateFollowing some research and a meeting with the nurse,we knew a transplant was the only way to get her offdialysis. I am one of four, and all of us were happy todonate. As only two siblings could be tested at any onetime, it made sense for me and my sister Poonam tobe tested. My younger sister has the youngest childrenin the family and my brother Pete was living abroad.I was fortunate to have a friend from work who haddonated her kidney to her brother, and she was aninspiration. I also discovered through work manyother families who had successful live donor kidneytransplants. As the eldest sibling, with the eldestchildren, and living closest to mum, I felt it could onlybe me.How my family copedI have been married for 16 years and have two children,a 13-year-old daughter and an 11-year-old son, and likemany South Asian families, I also have my in-laws livingwith me, so I knew I had a lot of support and help formy children. It made the process far less daunting.My husband Nilesh and I kept the children informedthroughout the process. It was hard for them. Asthe date was approaching, both children weregetting upset. There were lots of tears, they found itparticularly difficult that they couldn’t visit me in thehospital during my stay. My son would say, “Mum, whyyou?” and “Mum, do you have to do it?”www.kidneycareuk.org
LEARN MORE29He soon understood my decision because he couldsee his grandma’s health declining. During this time,my dad played a pivotal role in supporting both myhusband and children.Support from my in-lawsInitially, my in-laws had reservations. They didn’t wantme to donate because they did not know anyone elsewho had done this. They assumed that my mum wouldhave to spend the rest of her life on dialysis. I wish I hadtaken them to the appointment with the surgeon. Thiswould have reassured them, and their questions wouldhave been answered by the doctors.“I I have decided to write about myexperience, which will be translatedinto Gujarati. I hope it helps educatepeople about donating their kidneys.“very hard. Also, seeing how Covid-19 has affected mywife’s recovery is hard, too. Being at home, we arespending every moment together and this itself can bechallenging because we are very social people and wehave missed out on valuable celebrations.”Several religious festivals were missed. Diwali, whichmarks the triumph of good over evil and light overdarkness, was celebrated differently. Normally wewould spend a few days together, eat home-cookedfood, light Diwali lamps around the house, listento music and celebrate with fireworks and specialgreetings.Vanessa and her familyWhen the date for the donation was confirmed, I toldmy in-laws I couldn’t do it without their support andblessing. I explained the thorough testing process, andafter the lengthy chat they gave me their undividedsupport and blessing.Within the South Asian community, many think thatdonating a kidney is a rare occurrence. Extendedfamily members questioned my decision to donate.My in-laws helped educate them. I have decided towrite about my experience, which will be translatedinto Gujarati. I hope it helps educate people aboutdonating their kidneys.Vanessa’s mum and dadThey also missed out on Navratri (‘nav’ means nineand ‘ratri’ means night). This is a celebration lastingnine days. We perform a traditional dance called thegarba with dhandiya ras sticks.Mum and dad were sorely missed by the wholefamily on Raksha Bandhan, too. This is a festivalthat celebrates the bond between a brother andsister. Sisters tie a bracelet called a rakhi aroundtheir brothers’ wrists as a symbol of their uniquerelationship.This year celebrating Raksha Bandhan was extraspecialbecause my brother was back in the UK aftereight years. Mum wanted to have all of us around at herhouse but because of Covid-19, we didn’t want to putMum and Dad at risk. But, with mum off dialysis, andfeeling healthier and happier, we are all looking forwardto enjoying these festivals together in the future.Impact on religious festivalsThe transplant was successful but due to Covid-19restrictions and my mum’s vulnerability, both Mumand Dad have missed out on important religiousfestivals and family gatherings.My dad said, “Family mean the most to me, and tonot see them or spend time with them is of courseFor more information on donatingyour kidney please visitwww.kidneycareuk.org/learn-moreIssue 16 | Spring 2022
Page 1 and 2: Spring 2022Issue 16Improvingorgan d
Page 3 and 4: 3Welcome toKidney MattersWelcome to
Page 5 and 6: LEARN MORE5“National audits show
Page 7 and 8: 7Reducing the incidence of DGFWe wo
Page 9 and 10: LEARN MOREMe awake after my transpl
Page 11 and 12: 11What can happen if care-partners
Page 13 and 14: 13to question my close relationship
Page 15 and 16: 15admission. Over the next seven mo
Page 17 and 18: 17We hope you enjoy it as much as w
Page 19 and 20: 19Supporting our localTrustHowever,
Page 21 and 22: Cooking in the Kidney Kitchen with
Page 23 and 24: 23Eric from Killyleagh, who receive
Page 25 and 26: 25primarily an infection of the bla
Page 27: 27formulation. This is likely to be
Page 31 and 32: 31Marie and Barry raised money atth
Page 33 and 34: 33Introducing the Kidney Failure Ri
Page 35 and 36: 35Feeling festive andenjoying Chris
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