‘I’ve spent 32,000 hours chained to a dialysis machine – I want my life back’

Sehnaz knew dialysis would be ‘hell’ but had to choose the treatment to avoid death (Picture: Belinda Jiao)

In 1992, Sehnaz Hanslot was told she only had one month to live.

Over thirty years later, the artist has defied her doctors – but at a steep price.

She has spent over 32,000 hours chained to a brutal dialysis machine which painstakingly pumps blood out of her body and cleanses it.

Sehnaz has waited 15 years for a life-saving kidney, but like many from ethnic minority backgrounds, her chances of a match are limited by a shortage of organ donors from her community.

The dialysis machine requires with 15 to 20kg of fluid water cleanse her blood (Picture: Belinda Jiao)

She told Metro: ‘Dialysis is absolute hell. It’s an exhaustion that I cannot compare it to anything in life to be able to tell you what that feels like.

‘I don’t really have the words to convey what it would mean to get a donated kidney. I would have have my life back.’

Sehnaz is now calling for ethnic minorities to call for ‘to embrace organ donation’ during Organ Donor Week running from September 22 to September 25.

The artist came to the UK as a young girl from Zambia to get treatment for Fanconi Syndrome.

It is a condition which means the kidneys can’t recycle important nutrients and salts back into the body, which over time stresses and damages the organ, leading to kidney failure.

This health battle took her close to death as far back as 1992, when a doctor told her she only had a month to live, advising her to start dialysis.

But she refused, fearing it would be ‘hell’, and instead was miraculously kept alive on blood transfusions.

In 2007 her body collapsed again, forcing her to consider her decades long rejection of dialysis.

Sehnaz said: ‘The body doesn’t just switch off and die. Very slowly and gradually, every organ in your body slows down and begins to shut down. It is horrific.’

The artist accepted dialysis, kicking off a whole new ordeal which has stolen hours of her life from her.

Sehnaz and campaign groups are calling for more ethnic minorities to donate their organs (Photo byPeter Dazeley/Getty Images)

‘The very first four years of my time on dialysis, it was an absolute horror,’ she said.

‘Not so much mentally, but physically trying to pull myself together and find the strength to be able to show up and and go with it.

After seven years of ‘hell’, Sehnaz was told she needed more, not less of the invasive treatment.

So in 2014 she switched to home dialysis, completing five sessions a week.

Each session takes up to seven hours and can cause extreme cold, cramping, and persistent fatigue.

The only way out is a kidney transplant, with Sehnaz first joining the waiting list 15 years ago.

For years the prospect of a match was all but impossible because of the high levels of antibodies in her blood, the result of early blood transfusions.

New technology has made a successful donation from a kidney transplant from a living donor a possibility (Picture: Belinda Jiao)

However modern technology means there are ways to reduce these harmful antibodies, meaning Sehnaz’s doctors have said she could successfully receive a healthy kidney donated from a living donor.

There were over 900 people who donated a kidney in April 2024 to March 2025, but Sehnaz is yet to find a donor.

She said: ‘I’ve held on all these years, hoping for a call. Knowing that a living donor could give me a second chance, that’s a light I haven’t seen in a long time.’

An organ donor is often more likely to be a good match if they come from the same community or ethnic background.

This is because people with shared ancestry are more likely to have similar tissue types, which lowers the risk of the body rejecting the transplant.

However black and asian people are significantly underrepresented among organ donors in the UK.

A report in December 2023 found that while 18 per cent of the population belongs to the BAME community, they represent only 10.2 per cent of organ donors.

Ethnic minorities also made up 30 per cent of people who opted out of organ donation in 2024, a NHS report found.

These disparities is leading to longer wait times and fewer life-saving transplants for this communities.

It means white people are 20 per cent more likely to find a kidney donor, with 81 per cent of BAME patients still waiting for a new kidney one year after being listed for a transplant.

Black and asian people in the UK are significantly underrepresented among organ donors (Picture: LEON NEAL/AFP via Getty Images)

Orin Lewis, the co-founder of the African Caribbean Leukaemia Trust and the Co-Chair of the National Black, Asian, Mixed Race, and Minority Ethnic Transplant Alliance (NBTA), says a cultural shift is needed to encourage more minorities to donate.

He said: ‘There are cultural and religious myths, fears and taboos, as well as mistrust of the medical establishment.

‘People are not aware of the significance of the ethnicity of the donor or the patient having to be significantly the same.

‘There are potential donors out there who are not registered and don’t realise the significance of this.’

He hopes that stories like Sehnaz can hope encourage ethnic minorities to come forward.

Sehnaz herself longs for a living donor to step into the spotlight and saver her from thousands of hours of more agony tied to a dialysis machine.

She said: ‘I don’t really have the words to convey what it would mean if a kidney donor came forward, but I would have my life back.

‘I will always choose life, but there is a pay a price on dialysis. With a donor I will be able to live as normal. Living is taken for granted.’

A spokesperson for NHS Blood and Transplant told Metro: ‘Dialysis is a vital treatment, but it is not a cure, and it places huge restrictions on people’s lives. 

‘We urgently need more people to consider organ donation and, in particular, we need more donors with Black and Asian heritage. 

‘Registering your decision on the NHS Organ Donor Register is the best way for people to know your intentions and we know that families are much more likely to agree to donation if they know it’s what their loved one wanted.

‘Given that kidneys are matched by blood group and tissue type, there is a better chance of not only finding a suitable match from a donor of the same ethnicity, but better outcomes for the patient.’

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