A woman who described herself ‘crash landing into kidney disease’ and having to have three kidney transplants has shared her experience about organ donation to highlight how much it has affected her life and to try to help others.
At the age of 20, Debbie explained that she had suddenly developed the disease, going from ‘perfectly healthy’ to being diagnosed with the illness at St Richard’s Hospital in Chichester.
She was on dialysis within 24 hours.
The symptoms she experienced ranged from swollen ankles to feeling excessively tired and having very high blood pressure.
After her experience, Debbie cannot emphasise enough the importance of regularly checking blood pressure levels.
Throughout Debbie’s life she has had a total of three kidney transplants, her first in 1994 and subsequently two others in 2008 and her most recent transplant, donated in June 2016.
Debbie has chosen World Kidney Day today (Thursday) to speak about her unique experience.
She said: “Transplants really are the luck of the draw, those of us with transplants are still immunosuppressed like a cancer patient going through chemotherapy.
“We have to be very careful around the general public at times. Catching a bug, for instance, could lose you your transplant.”
Debbie has named her latest kidney ‘Tilly’. She said she can’t ‘find a logical answer’ for the name but she said many transplant recipients name their new organs.
Debbie only has vague knowledge of where all three kidneys came from. In between her kidney transplants and waiting on the organ donation list, Debbie experienced tough courses of dialysis, whether in clinics or at home.
With no specialist dialysis unit at St Richard’s, people living in West Sussex have to travel to Bognor or further afield to other clinics for their treatment away from the home.
Debbie believes this comes down to staffing and, what she called dialysis being a ‘specialist game’.
Dialysis is a treatment to perform the functions that a healthy kidney would in filtering the body’s blood – whether this would be at home or at a clinic. During the 14 year gap between Debbie’s first and second transplant, she says she fought for a home dialysis programme. Eventually when Debbie’s second transplant failed this became possible.
Debbie was one of five in the Sussex area on a pilot home programme in 2009.
This involved a portable machine that Debbie even took on holiday allowing her to choose when and where she could receive the treatment.
Debbie defines hospital dialysis as ‘enough to maintain life but not enough to maintain a quality of life’.
“People need to understand that transplants are respite from treatment, not a cure,” she explained.
Queen Alexandra Hospital (QA) in Portsmouth is a place that Debbie described as the ‘umbrella and the main unit for Sussex that treats kidney disease’.
She said: “The way I look at it is, if they (the consultants) don’t know it, then it doesn’t need to be known. The QA Hospital is a centre of excellence and the hospital covers as far north as Guildford, as far west as Bournemouth and as far east as Brighton.”
With kidneys being an essential organ, Debbie, unfortunately, over the years has experienced issues in other parts of her body as a result of the illness.
The complications Debbie has had to face include a fractured spine, due to years of renal bone disease and having both knees replaced.
However, positive Debbie says she accepted that she had been ‘dealt these cards in life’ and was going to fight the illness with all her strength.
Debbie is spreading awareness of kidney disease to coincide with World Kidney Day to highlight how important being a donor is.
New opt-out law
Currently, people in Wales, Ireland and Scotland automatically have their organs donated when they die, unless they have specifically ‘opted out’.
On February 24, MPs voted in favour of a change in law so this would also apply in England. Currently, only people who are registered on the organ donation list would give up their organs when they die and often a person’s family can over-rule this.
Debbie is thrilled by this news, especially after personally writing to her MP, Nick Gibb, asking for his support.
She said: “People need to also remember that people die every day waiting for a transplant.
“Some organs go to waste that could save a life.
“It’s all about raising the awareness of everything so people can know more.”
n For more visit www.organdonation.nhs.uk