During Organ Donation Week, September 7 to 13, NHS Blood and Transplant (NHSBT) and Bedfordshire Hospitals NHS Foundation Trust are urging people to talk to their families about organ donation to increase the number of people whose lives can be saved or transformed by an organ transplant.
From 20th May this year, the law around organ donation has now changed in England. All adults are now considered as having agreed to donate their own organs when they die, unless they record a decision not to donate, are in one of the excluded groups or have told their family that they don’t want to donate.
This week, doctors and specialist nurses at Bedfordshire Hospitals, are urging families across the district to talk about their organ donation decision and make sure their loved ones are aware as families will continue to be approached before organ donation goes ahead.
Maciej Ryszka, Clinical Lead for Organ Donation at Bedfordshire Hospitals said: “Knowing what your relative wanted, helps families support their decision around organ donation at what is often a difficult time. We need more people in Bedfordshire to talk about organ donation to increase the number of lifesaving transplants.”
These conversations are especially important for residents from BAME backgrounds. People from these communities are more likely to need a transplant, however, often wait longer as the best match will often come from someone of the same ethnicity.
This story of 14yr old Aiden is evidence that organ transplants don’t just save the recipient’s life but also that of their family.
Lisa-Marie Francois is mum to 14yr old Aiden who underwent a kidney transplant in 2018.
Aiden was diagnosed with Nephrotic Syndrome (a type of kidney disorder) in December 2008 just before his third birthday by his GP who told Lisa-Marie to take him to hospital immediately. Aiden ended up staying over two weeks in hospital, spending his third birthday there. Aiden then had one of his first operations and was sent home with a long list of medication just in time for Christmas.
Aiden had several relapses resulting in more than 15 hospital stays and around five biopsies over the years. His condition changed from Steroid Sensitive Nephrotic Syndrome to Steroid Dependant Nephrotic Syndrome to primary Focal Segmental Glomerulosclerosis (FSGS) – a type of kidney disease.
Aiden took a turn for the worst in November 2016 resulting in a month long hospital stay and started off 2017 by having Haemodialysis treatment. This was necessary as his kidneys had completely shut down. This treatment and its gruelling schedule were extremely hard for Aiden and he struggled with depression.
This is incredibly difficult and upsetting for any parent to witness – their child suffering and so poorly and being unable to make them better. Lisa-Marie talks about taking care of her son, “As a parent, you don’t think of anything going on in the background except the wellbeing and health of your children. We had to travel four days a week to get this treatment which was exhausting for Aiden but I knew I needed be the best support system I could for him. I also have a younger son as well as Aiden and we all soldier on together as a unit to fight this illness. We were provided with transport to and from the hospital which was a great load off my mind. When having his treatment, Aiden was able to keep up with his schoolwork as there were teachers on the ward which was very much appreciated.”
In March 2017 Aiden had another surgery to have a Peritoneal Dialysis (PD) line fitted to help give him a better life balance as this treatment could be done at home. Recalling this change, Lisa-Marie said, “This had a huge impact on our family, I had to learn to use the PD machine so that I could attach Aiden to it and take him off.”
After numerous discussions, recommendations, panel meetings, endless blood tests and meetings with the Transplant Surgeon, Aiden was put on the Transplant List in May 2018.
“When we met with the Transplant Surgeon and his team we were advised that I had to ensure my phone was always on as the call could literally come at anytime, and so it did! 5.30am on 19 July 2018 is the moment we got that call from the Transplant Team to say they had found a possible kidney match for Aiden and we needed to get to the hospital for 9am.
Aiden had his surgery around midnight on 20 July 2018. Thankfully, everything went well and after two weeks in hospital Aiden was home. Since the transplant operation there have been hiccups along the way and one more bout of Haemodialysis treatment but things are now on the up and up. Aiden is on medication daily and will be for the rest of his life but he is a happy teenager with only the worries of studying his GCSE subjects like every other normal young person venturing into Year 10 at school.
The organ transplant has not only transformed Aiden’s life for the better but it has really changed all of our lives and we are forever grateful to the donor and their family.”
Find out more and register your decision by visiting NHS Organ Donor Register at www.organdonation.nhs.uk and most importantly, share your decision with your family. Videos answering some of the common myths and misconceptions about organ donation can also be viewed at the NHS Organ Donation YouTube channel, which you can visit by clicking here.