Kidney Matters - Issue 16 Spring 2022

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The arrival of our light
FEATURE INTERVIEW
When 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 things
that are also affected. Vanessa Patel talks about her family’s journey from dialysis to
post-transplant and everything in between.
How it started
Mum’s kidney function levels had been dropping for
several years, but she was still leading a good life.
However, Mum’s kidneys deteriorated quickly. We saw
the impact.
She was getting increasingly tired, not sleeping well
at night, and developing rashes. Mum was very upset,
and we saw my dad’s wellbeing also suffered - he lost a
lot of weight - but Dad is strong and practical and just
supported her.
He said, “Although it was on the horizon, I was sad and
upset for my wife. I am retired and, therefore, we were
planning on having a fulfilled retired life, travelling, and
spending time with our eight grandchildren. So, we
were facing a big uncertainty.”
Vanessa and her mum after the transplant
family holiday to Dubai
Mum 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, this
all stopped as I was shielding from March 2020. I was
very frightened in the early months of the pandemic
and what it meant if I was to catch Covid-19. However,
I relied upon the support of my family and the video
calls I received daily. My family even organised an
online cocktail party for my birthday, which was lovely.”
My dad is very organised, he took care of her dialysis
supplies and hospital appointments. He said, “I
have continued to support my wife by chasing
appointments, organising, and checking all the right
medication for my wife is available. If I can do anything
to lessen the burden on my wife, I will. I have learnt how
to do many household chores too.”
My decision to donate
Following some research and a meeting with the nurse,
we knew a transplant was the only way to get her off
dialysis. I am one of four, and all of us were happy to
donate. As only two siblings could be tested at any one
time, it made sense for me and my sister Poonam to
be tested. My younger sister has the youngest children
in the family and my brother Pete was living abroad.
I was fortunate to have a friend from work who had
donated her kidney to her brother, and she was an
inspiration. I also discovered through work many
other families who had successful live donor kidney
transplants. As the eldest sibling, with the eldest
children, and living closest to mum, I felt it could only
be me.
How my family coped
I have been married for 16 years and have two children,
a 13-year-old daughter and an 11-year-old son, and like
many South Asian families, I also have my in-laws living
with me, so I knew I had a lot of support and help for
my children. It made the process far less daunting.
My husband Nilesh and I kept the children informed
throughout the process. It was hard for them. As
the date was approaching, both children were
getting upset. There were lots of tears, they found it
particularly difficult that they couldn’t visit me in the
hospital during my stay. My son would say, “Mum, why
you?” and “Mum, do you have to do it?”
www.kidneycareuk.org