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A mum whose whole world changed after a lifesaving transplant is sharing her story with patients and visitors at Royal Blackburn Teaching Hospital to raise awareness of kidney donation.
Sadia Rafiq, 35, who lives in Blackburn, has had her transplant story emblazoned on a wall mount which has been placed outside the hospital’s critical care unit.
It is one of a number of stories being shared by families on placards outside the unit to highlight the importance of organ donation.
Sadia, who is married to Tahir and has a seven-year-old son Awais, is particularly keen to share her inspiring tale to encourage more people from the Asian community to consider organ donation.
Sadia’s plight began at the age of 23 when she began experiencing sharp pains and cramps in her stomach.
Sadia remembers: “I had been perfectly fine before that and was never ill.
“The doctor could not work out what was wrong with me so carried out a number of tests and these showed there was an abnormality with my kidneys.
“I was referred to Royal Blackburn Hospital and put under the care of renal specialist Dr LR Solomon.
“He told me that one of my kidneys was smaller than the other and my combined kidney function was quite low – around 50 to 60 per cent.
“This came as a real shock to me and after more tests, I was diagnosed with reflex nephrology. This is basically when the urine flows back and damages the kidneys.
“I was totally unaware I had this condition and Dr Solomon described it as a silent killer.”
For the next few years, Sadia, a primary school teacher, was treated with different medications and her kidney function plummeted to 12 per cent and at one point, she was taking 25 different tablets a day.
When Sadia’s kidney function dropped to just eight per cent, she was put on dialysis and chose peritoneal dialysis which she could have at home as her son was only about three at the time.
Sadia recalls: “It was a very difficult time for all my family.
“When you are on dialysis for eight hours a day, seven days a week, you can’t travel too far as you have to take the machine with you.
“I had no energy. I lost my appetite and couldn’t sleep properly as the machine kept bleeping.
“As things deteriorated, I couldn’t do anything for my family and couldn’t look after my son properly or clean or cook. At one stage, I couldn’t even bathe myself. My husband had to reduce his hours to help me.”
Sadia’s parents and husband are diabetic so were unable to donate a kidney to Sadia. She was put on the NHS Organ Donor waiting list.
However, she was told although the waiting time for a kidney was two to three years, for her, it was likely to be five to seven years as there was a shortage of donors from the BME community.
Sadia says: “I was put on the organ donor waiting list when I was about 30. While I was on dialysis, I felt dejected and thought I wouldn’t get a transplant.”
Sadia was on dialysis for 11 months and in July 2013, she received a telephone call at 5am telling her there was a kidney but she was the fourth backup on the list.
Sadia went to Manchester Royal Infirmary and underwent tests. Doctors then told her the first three people in line for the kidney could not go ahead with the transplant for different reasons and the following morning, Sadia had the surgery to give her a new kidney.
Sadia was in hospital for 15 days before returning home and slowly built her health and strength back up.
She was unable to return to teaching as she had been off for so long, so she began doing voluntary work and is now working as a tutor for Blackburn Council teaching adults.
Sadia is doing really well and says the transplant has transformed her life.
She is working hard to raise awareness of organ donation in the BME community and wants to increase education and tackle myths.
Sadia, who became involved with the organisation One Voice which promotes an inclusive and vibrant community in Blackburn and Darwen, says: “I have been very lucky as I received a kidney and have been given my life back.
“But every day, there are people in the UK dying while waiting for a transplant. Many of them will be from the BME community as less organs are donated.
“I think there is a lack of education and talking openly is the answer. When I ask people if they would accept a kidney, they say yes, but when I ask them if they’d donate one, they say no.
“If it is okay to accept a kidney, why is it not okay to give one?
“Younger people are more willing to listen and change, but older people are more resistant.
“There is no clear answer and it is an issue and talking openly is the answer. We are making headway, but it is a slow process.”
Sadia has regular check-ups at Royal Blackburn Teaching Hospital and describes the care she has received as “fantastic.”
She says: “I always said if I received a kidney, I would give back to the community so I was more than happy to share my transplant story to go on placards at Royal Blackburn Teaching Hospital.
“My new kidney has given me my life back and I have now got the energy to enjoy being a mum. My son even says: ‘I have got my mummy back.’
“Organ donation has made such a huge difference to my life and I want to give other people hope.
“I have written to the family of my donor to thank them as I think it is fantastic what they have done.
“I just hope more people so more lives can be saved.”
Deborah Vernon, specialist nurse in organ donation based at Royal Blackburn Teaching Hospital, says: “The work Sadia is doing to raise awareness of organ donation and the way she is sharing her story is brilliant.
“There is a real need for more organ donors from the BME community as on average, they wait three times longer than the rest of the population for a transplant because of the lack of donors.
“We are very grateful to Sadia for sharing her story on the placards outside critical care to raise awareness.”
VIDEOS
Sadia Rafiq has filmed online videos in both English and Urdu to tell her story and raise awareness of organ donation in the Asian community.
Here is a link to the video in English: https://www.youtube.com/watch?v=8P2hFBWpJwk
Here is a link to the video in Urdu: https://www.youtube.com/watch?v=7dJusHVMNO0
FACTFILE
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In 2015/16, there were 27 deceased donors (two per cent) from Asian communities out of a total of 1,364 deceased donors
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The total UK deceased donors – 1,364 – resulted in 3,519 organ transplants
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352 patients from Asian communities received kidney transplants (16 per cent). At the end of March 2016, 18 per cent of patients on the waiting list for a kidney transplant were from these communities
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During the same period, there were 67 living donors from Asian communities and 83 patients from these communities (eight per cent) who received a kidney from a living donor
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Although many black and Asian patients are able to receive a transplant from a white donor, for many patients the best match will come from a donor from the same ethnic background as they are more likely to have matching blood groups and tissue types
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Organ donation saves lives and it only takes two minutes to sign up as an organ donor. Register at: organdonation.nhs.uk