“People are dying waiting for an organ donor,” says mum who had a kidney transplant

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During organ donation week people are being urged to tell their loved ones they want to be a donor to make sure they save lives. Catherine Scott reports.

Rehana Kosar’s kidney problems started at a young age and she was constantly in and out of hospital as a child.

She suffered from severe kidney infections, which led to regular hospital visits and a diagnosis by doctors of kidney disease glomerulonephritis.

She lost her father when he was 55, in 1993 when he had a heart attack due to kidney failure following his kidney transplant after suffering the rare condition. The mum of two from Bradford started kidney dialysis three times a day in 2013, aged 40. “I was in and out of hospital because of kidney failure and my condition was controlled by antibiotics. It wasn’t until my forties that I needed to have dialysis,” explains Rehana.

“When I was advised I needed treatment I was very emotional and anxious…  I didn’t know what to expect as my dad had died of kidney failure years earlier. It wasn’t a pleasant experience going to hospital three times a week, being hooked up to a machine for three hours at a time to have my fluid, water retention and urine cleaned out.”

Rehana says she was lucky as shew as only in dialysis for nine months before a donor kidney became available, but she says it had already started to affect her mental health,

“I was very emotional. Being hooked to a machine three days a week really takes over your life and there are so many things you can’t do. It really started to effect me mentally, I became quite depressed.” When she got the call to say a woman had died in a car accident and that she had donated her kidney and it was a good match, she was told to get to St James’ Hospitals, Leeds as soon as possible.

“Having the transplant was brilliant: I was strong, positive, and so grateful to have my life back. When I first came home even normal everyday things were a struggle; I needed support from my family to get out of bed as I was in so much pain.”

But the emotional side of having a transplant and receiving a donor organ took longer to heal than the physical for Rehana.

“I suffered anxiety and depression after my transplant. I had lost my dad in 1993 when he had a heart attack brought on by renal failure following an unsuccessful transplant. I was very young when it happened and in the back of my mind, something set off a trigger when I had my operation and I got it into my head that my new kidney was going to fail.

“Thankfully it didn’t and I am grateful for the counselling which got me ‘back to normal’ and helped improve my self-esteem. It also gave me my confidence back.”

As well as seeking help from her counsellor, Rehana also sought help from the renal support team at St Luke’s Hospital , Bradford where she became an ambassador for renal patients, raising awareness and fund-raising for the unit.

“After a year, slowly things got back to normality and I returned to work which was the best thing for me and I haven’t looked back.”

Rehana, who has worked as a customer assistant at Tesco in Sunbridge Road, Bradford, for 10 years, added: “They kept my job open for me after my transplant as I was off work for a year. They have been wonderful.

“ I also forget my donor’s family so I write them a letter to let them know I am doing really well. I also take cakes to work and to the renal team at St Luke’s.

“I celebrate because I got a second chance at life. If I hadn’t had the transplant I wouldn’t be here today. I go on holidays, eat well, exercise and live life to the full.” She supports new patients when they start dialysis for the first time and talks to them about her journey waiting for a transplant and how it can help them. Rehana has also spoken out about the stigma of organ donation in the Asian community and is now campaigning for people to sign up to the organ donor register and ensure their loves ones know their wishes.

“Within the Asian community, when we pass away, families want the person to rest in peace but what they are not aware of is any part of their organ can save somebody’s life,” she says.

“There are people out there dying for transplants – especially kidney transplants here in Bradford - so if you aren’t on that organ donor register, please join as it saved my life and it could save yours. People don’t know when they might need an organ.

“God wanted me to have a healthy life and he provided me with this second chance. He wanted me to live that life and that’s why the south Asian community must get on board and join up and sign the register today. I’m here as a survivor and I want to share my story and make other people get better.”

Raja Ahmed, 28, from Bradford, is one of the 250 patients across West Yorkshire waiting on the transplant list. He also suffers from glomerulonephritides.

“Dialysis isn’t easy but I try to keep positive as there is always light at the end of the tunnel. Kidney disease does not run in my family. I was 27 when I was diagnosed and I am now 28. I found it very hard to come to terms with needing a transplant. I thought in my head that I was invincible and live forever, so it was huge, shock.

“Transplantation and organ donation is a taboo subject within the Asian community. We don’t tend to talk about it. I know people who have waited for years and are still on dialysis.

“My life is on hold and I am just waiting on that call to say a transplant is available or that organ has arrived for me. It is like a waiting game. You go through so many emotions and feelings. There are always ways to cope but it is a rollercoaster of a ride and I want everyone to realise what it is like. But the most important message is to try and stay positive.”

www.organdonation.nhs.uk/