‘Waiting for a kidney during the pandemic made life so much harder’

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A 23-year old student has said that waiting for a kidney transplant during the pandemic made life “so much harder”.

Alisha Gokani, from Kent, is one of 4,658 patients in the UK waiting for a kidney transplant and has been on the list since 2019.

She is backing an NHS Blood and Transplant campaign urging people to share and register their decision about organ donation on World Kidney Day.

Even though the law around organ donation has now changed to an opt-out system across England, Wales and Scotland, many people remain unaware that families will still always be consulted before organ donation goes ahead.

Ms Gokani said: “At just seven years old I was told I had a rare condition which meant that my kidneys would fail before I reached my teenage years.

“When the time came that I began to get seriously ill, my mum was kind enough to donate one of her kidneys without a second thought.

“However, it wasn’t as easy as we thought, and, even with treatments and attempts at preventions, I kept getting infections and eventually rejected this kidney at the age of 19.

“Since then, I have been on dialysis. As a young adult attempting to get a degree, this hasn’t been the easiest.

“Every day is a struggle as I’m faced with complete exhaustion from having treatment four times a week alongside full-time education.

“I have been told that a living donor from the same ethnicity as me would be the best possible match.

“Waiting for a kidney and being on dialysis during the pandemic has also thrown in extra complications, making life waiting for a transplant so much harder.

She added: “Can I please ask people to discuss their organ donation decision with their family? That could be by joining the register to donate their organs after they die or maybe looking to see if living donation is something they could consider.

“Living donation is a big ask and something that shouldn’t be taken lightly, but I am kindly asking people to read more about organ donation, talk to their family and discuss their decision.”

Azeem Ahmad became a living kidney donor for someone he did not know in 2019 (NHS Blood and Transplant/PA)

The 35-year-old mental health consultant, from Newcastle, said: “I first really became aware of organ donation in 2017 when Andy Cole, the former footballer, needed a kidney. I think I had that in the back of my mind for some time.

“When the footballer Neville Southall did a ‘Twitter takeover’ for the family of a young girl who needed a kidney, I thought that I should see if I could be a match and so I got in touch.

“The specialists really helped me understand about all the different options available to me and the more I knew, the more I decided it was the right thing for me to do.

“I was eventually matched with a number of potential people needing a kidney and in 2019 I was asked if I would donate to a person who was the best match for me.

“I don’t think it is for everyone, but for me it was definitely the right thing to do.

“I had to take things slowly. Initially I did get fatigued from time to time, but I’m back to health and running again. I’ve called my remaining kidney ‘Kevin’ because he is Home Alone.

Kidney donor Azeem Ahmed completed the Great North Run (NHS Blood and Transplant/PA)

“I hope that my story will inspire others. I hope that by sharing my story that someone might read it and think ‘Maybe I can do that’.”

It comes as a separate campaign, the ORGANise initiative, was launched to boost the number of organ donors from black, Asian, mixed heritage and minority ethnic communities.

– For more information, or to register your organ donation decision, visit https://www.organdonation.nhs.uk/ or call 0300 123 23 23.

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