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'I need a little bit more than prayer, I need a kidney'

OPTIMISTIC: Primrose has a positive outlook but says not being able to fly home to Jamaica because of her condition has been most upsetting

PRIMROSE GRANVILLE is living with polycystic kidney disease and facing the reality that one day in the near future, she will need a kidney transplant. At some point, her son, who also has the hereditary condition, will also be confronted with same news.

But despite the high number of black patients requiring transplants, donors are severely lacking.

In the year 2016/17, only 17 people with an African Caribbean background donated a kidney.

The 49-year-old, who has known for 21 years that she will eventually experience kidney failure, said she believes the number of donors is so low due to taboo around the subject.

“I think it’s very historical because if we go back many many centuries ago when people from African origin died, that is the only time that they owned their bodies,” she said.

A Christian herself, Primrose said transgenerational messages about the sacred nature of the body, including those that claim the body must return to God the way it came, and misconceptions that organ donation is forbidden, also continue to influence attitudes today, even though many have moved away from the faith.

The sermon that followed the testimony Primrose gave at her Pentecostal church in Bristol, where she lives, focused on praying for healing. But Primrose needs more than prayer.

“I need a little bit more than prayer, I need a kidney,” she said.

She also pointed to an underlying belief held by many that if you sign an organ donation card and get into an accident, medical staff will let you die so that they can use your organs for others.

In reality, doctor’s work to save the life of the patient they are treating and the requirements for viable organ donation means that even those that die tragically are not always suitable donor candidates.

The broadcast journalist wants people to have the conversation about donations so that their loved ones know their wishes. Family refusal is one of the biggest reasons why many potential black organ donations are thwarted.


WATCH: Primrose tells her story

“People need to have the conversation with their loved ones so that if anything were to happen and they pass, then their loved one knows that there’s no debating what they wanted in death.”

The mother-of-one has already seen the incredible impact organ donation can have on those living with debilitating diseases.

Her mother and sister both had their lives saved by kidney donors.

“[My mum] had a transplant in January 2004. She’s a whole new human being. I remember a couple of months after she had her transplant I actually walked past my mother on the street because I wasn’t used to seeing her looking so well. She looked so good. My mum’s fine and dandy. She’s living life to the fullest,” she said.

While Primrose is not yet on dialysis and looks after health by following a healthy diet and avoiding certain foods and drinks, she experiences extreme tiredness and is weary of the day poor health means she can no longer do the things she loves.

“Any minute now I could hear, ‘it’s time for you to start dialysis’ – that’s very much a reality.”

Her condition already means that she is no longer able to travel to Jamaica.

“I love going home to Jamaica, I’m not allowed to fly long haul at all. For me, that’s a big deal. That’s the most upsetting part of it.”

Despite her personal experience, Primrose’s motivation to raise awareness about donation and to encourage more people with a similar background to talk about it and opt to become a donor is altruistic.

“My kidneys are not worth anything but anything else that I’ve got going, I want them given to somebody should I go tragically. I want to help somebody else.

“There are so many ways that organ donation touches lives.”

“For me, this is about more than me. My [19-year-old] son will also have polycystic kidney disease.

“I want to lay a path for my only child that is smooth sailing...I want to be able to think that my son, when he needs a kidney, he can walk in and they say, ‘right your kidney has failed, come in three weeks’ time and we’ll do the operation’ because it’s going to be so easy to get one. Can you imagine a world like that?”

For more information on organ donation, visit www.organdonation.nhs.uk

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