A FEAR of death can make discussing organ donations a frightening prospect for families, but a North Bersted mum has urged potential donors to let people know their wishes before it is too late.
Debbie Wood, 40, of Finch Gardens, is preparing to go on the transplant list for the third time in her life and is looking to highlight the message publicised by the NHS during National Transplant Week last month.
“The point of transplant week this year was to say not only should you sign up – spell it out,” she said.
“Tell people that’s your wish. Quite a lot of donations don’t happen because the family weren’t aware that’s what the donor wanted and the family need to consent.
“Make sure the family know. People need to have that discussion.
“People don’t want to talk about death and how it affects their families. Maybe we need to not be quite so afraid of it.
“I think there’s fear of it. I think people worry that if they carry a donor card, doctors won’t help them and that they just see them as potential donors.
“The national transplant and donor website is brilliant. It’s got all those questions for people to read up on and check out.”
She said for a lot of people it was something they meant to do, but often it was something they did not think about until it directly affected them.
Diagnosed with chronic renal failure when she was just 20, in 1994, Debbie has been without a kidney since 2008, when her last transplant failed.
Since then, she has needed to use dialysis to carry out the vital work normally done by kidneys.
She now has a dialysis machine at home, but would previously have to go to the Bognor Regis War Memorial Hospital three times a week, four hours at a time, for a dialysis session.
“It’s not a great way of life,” she said. “I wouldn’t say it’s awful, because you get used to it.”
She said she feels strongly that people need to be aware of the importance of being an organ donor, but also not just thinking that signing up to the donor list is enough in itself.
Debbie’s first transplant lasted around two years, as she lost it following the birth of her daughter.
“I had a successful pregnancy which was quite unheard of with that transplant. Then I went back on the long wait for the transplant.”
While her first transplant came about fairly quickly after her diagnosis, she had to wait until 2004 for her second kidney.
She said when someone is on the transplant list, it is a case of a suitable match becoming available, not just a matter of waiting to get to the top of the list.
“When they get an available organ, they will ring three or four people. You get to a hospital and have your blood done. They will go with who’s got the best chance with that kidney.”
However, she lost her second kidney in 2008, when she contracted a virus and since then has relied on dialysis.
This meant she had to visit the Bognor Regis War Memorial Hospital three times a week, for four-hour sessions on the dialysis machine.
However, before long she started dialysing at home, a move she said meant she got her freedom back.
She was one of the very first to go on the home-dialysing programme from Queen Alexandra Hospital, in Portsmouth, in May, 2009.
After only two weeks’ training, she was supplied with everything she needed by the hospital to start dialysis at home.
At home, she dialyses six times a week, for around three hours at a time.
This gives her much more flexibility, allowing her to go to work and plan her life around the dialysis.
Previously, when she had to go to hospital for dialysis treatment, she had to change her work hours, often leaving early.
Dialysing at home was her own choice, something for which she is grateful.
“I’ve got things under control that needed to be controlled.”
She went on to say: “I’ve consciously not been on the list for the past five years.
“I felt I needed that time to recover from previous surgeries and get myself well.
“I feel I’m in a better place. It’s an emotional rollercoaster from when you get that call to going through the surgery. It’s a lot of medical appointments afterwards. The team at QA are fabulous.”
However, dialysis is still not a complete replacement for a transplant kidney,
“With a kidney, it’s more natural and it’s what your body is used to.”
She feels now is the time to go back on the list and hopes to be listed for a transplant by the end of the year, but there is no telling when the end could be in sight.
“I just have to wait and hopefully get the match and go ahead. There’s no telling how long I could wait.
“It could be a few weeks or it could be a few years. It’s not a case of waiting until you’re at the top of the list.”
She urged people to consider becoming organ donors, and if they did, to highlight it to friends and family.
She also called on people undergoing dialysis treatment to consider dialysing at home and raising awareness that this was available.
She said there were a lot of social media groups where patients could share experiences.
“Sometimes you just want a little bit of reassurance from somebody,” she said.
For more information, visit http://www.organdonation.nhs.uk/newsroom/news_releases/article.asp?releaseId=366