Waiting for a transplant

Nurse Barbara Dunn was diagnosed with a chronic progressive liver disease called primary sclerosing cholangitis (PSC). Barbara had a liver transplant, and for a number of years after the transplant, her life was transformed.

“Before the operation I felt so tired,” says Barbara. "It was an awful tiredness, you felt like lying down and never waking up. [After the transplant] I felt alive," she says. 

Sadly, a couple of years later, there was bad news. “There’s a 2% chance that the PSC will return, and in my case it did. I’ve been on the waiting list for another transplant ever since.”

Barbara continues to work despite the demands of her condition. She is a surgical nurse at Wansbeck General Hospital in Ashington but she says her life has been on hold since doctors revealed she would need another transplant.

“You can't plan anything, and it’s continuously in the back of your mind. If the telephone rings you think, ‘Is this it?’ You’re living in a state of limbo. My kids and husband David have been great. Their support has been so important to me.

"Just because I'm the one who needs the transplant doesn’t mean it doesn’t affect them too. I can see it sometimes gets them down. There are emotional times.”

Mark Parsons

The average wait for a liver transplant is around 142 days, but the wait for a kidney can be much longer. Mark Parsons, 38, had waited four and a half years when he received his kidney. He had a transplant operation at Addenbrooke's Hospital in Cambridge in January 2007. The operation ended 26 years of living with kidney disease. During that time, Mark had worked as a transport officer at the Royal Mail's Ipswich depot.

The demands of the condition were such that he used to spend every night dialysing. He says, "It really got in the way of a normal life. No one in my family was a match to donate a kidney to me, so I had to wait for a donor organ from a stranger. I just had to make the best of it and hope that one day the phone would ring with news that I could have a transplant."

Bakhshish Kaur

For Bakhshish Kaur, 10 years of suffering was ended by a donation from within her own family. Bakhshish was registered for a kidney transplant in 1995, but she knew it could be a long wait because of the difficulty in finding a good match. Her blood group, B positive, is rare. In kidney transplants, the matching of blood group and tissue type is critical to success. A good tissue-type match is more likely among donors who share the same ethnicity. However, the proportion of non-white donors was, and still is, very low.

Of the six family members who were tested, her son Bhupinder, 41, was an excellent match. But Bakhshish hesitated, not wanting to take anything from one of her children. Bhupinder, however, was adamant: “We all wanted to help Mum and we were relieved that at least one of us was a match, because the future was bleak.”

In March 2000, the operations at Nottingham City Hospital for mother and son went well. “I was back to full strength in a few weeks,” says Bhupinder. He enjoys the same busy life he led before his donation, working in the family store, being with his family, going to the gym and playing football.

“His kidney was beautiful,” says Bakhshish. “It worked straight away and I thanked him and God for this miracle. Just living a normal life is a celebration.”

As someone who has received the gift of an organ before, Barbara understands this deep sense of appreciation and how returning to normality is a wonderful blessing. “I don’t think people can ever appreciate how grateful you are to your donor and their family,” she says. “The gratitude you feel towards them is just indescribable. You never stop thinking about the gift they gave you, not just at Christmas and the anniversary of your operation, but the less significant moments like when you’re making the family their tea.”

Barbara, Mark and Bakhshish are all keen to promote the NHS Organ Donor Register.

“Someone, somewhere out there, was generous enough to think about what a difference organ donation can make to people like me,” says Mark. “There are thousands of people awaiting transplants, and I would appeal to everyone to join the NHS Organ Donor Register.”

“All of my family have joined the NHS Organ Donor Register,” says Barbara. “They know what it’s like for someone who needs a transplant and want to help others one day too. After my last transplant lots of my children’s friends joined the register, wanting to help. I think it’s a wonderful gift to pledge to others.”

“Most people don't realise how much you can suffer on dialysis,” says Bakhshish. “I think more people should join the NHS Organ Donor Register. What's the use in wasting an organ? Give others a chance to live.”