Waiting is a strange phenomenon. Whether you are waiting for a bus to take you to work, exam results, for a baby to be born, it can make us uncomfortable and anxious. Now imagine having to wait for a phone call. A phone call that will not only change your life but the lives of all of your loved ones. Imagine a life waiting for something that could save your life but you may never get.
According to organdonation.nhs.uk approximately 49,000 people have had to experience this agonising wait for an organ transplant and unfortunately 6,000 of those have died waiting.
On December 1st, a new soft ‘opt out system’ for organ donation was implemented in Wales. This means that if you have lived in Wales for more than a year, you have three options. Firstly, you can physically opt in, meaning that your name is on the organ donor register. Secondly, you can do nothing, showing that you don’t object to being an organ donor. Thirdly, you can opt out if for some reason you don’t wish to donate your organs.
If you are keen on being a donor, opting in is advantageous as you can blatantly make your wishes known not only to family and friends but to the NHS. You can also choose which organs you wish to donate.
Anyone who knows someone on the organ waiting list is completely aware of the impact this has not just on the individual but, a community of people. Ceinwen Rees tells us about her twelve year-old son, Dylan, who underwent a transplant a year ago and what it has meant for them as a family.
“Dylan was born with a single right kidney and a grade IV reflux. This meant that his bladder wasn’t emptying properly, which caused recurring infections and unfortunately led to a deterioration in his kidney function.
“From the age of about six months, Dylan was put on a lot of medication. He also had to have intermittent catheterisation five times a day to ensure that he was infection free, thus reducing the scarring to his kidney. This meant that I was unable to return to work as the catheterisation had to be performed aseptically and I felt that, as his mother, it was my place to perform this procedure.
“Dylan’s medication and catheterisation routines meant that life was fairly restricted. When Dylan was three years old he underwent surgery to re-implant his ureter which corrected his grade iv reflux. The operation was a complete success and this meant that we no longer needed to catheterise him. This was fantastic news for us as a family and wonderful for Dylan because it meant that he could start school with his peers and could have a completely normal day, apart from having to take medicine at lunchtime.
“Dylan continued on his medication regime with very little kidney function deterioration for many years. However, we knew that the time would eventually come when he would need a transplant.
“When Dylan was nine, his kidney function began to deteriorate rapidly and we had the conversation with doctors about his options. Firstly myself and my husband could be considered as live donors or we could put Dylan on the transplant list.
“As parents we had no hesitation in putting ourselves forward as live donors. We both had tissue typing done to determine which one of us would be the better match. It transpired that we were both good matches, but I was marginally the better match. It also made sense that I was the donor as I have a less physically strenuous job than my husband.
“There was a long run up of tests before the transplant, consisting of ECGs, 24 hour urine tests, numerous blood tests, meetings with social workers, surgeons, counsellors etc. All this ensured that we were both in the best possible condition health-wise to endure the surgery ahead of us.
“Unfortunately, six weeks before our transplant date, Dylan’s condition deteriorated further and dialysis could no longer be avoided. This meant three weekly trips to Cardiff for a four hour stint on dialysis at the Children’s Kidney Centre. For us, this wasn’t so bad, as we had a date for transplant, but I cannot begin to imagine what this process must be like when there is no end in sight and you are just waiting for the call to say that a suitable kidney has become available from a cadaver donor.
“Because Dylan was not an adult we had to travel to Bristol for our transplant surgery and we could not be in the same hospital. I was having my kidney removed in Southmeads and Dylan was to undergo his surgery at The Royal Bristol Children’s hospital. This was difficult as it meant I could not see Dylan for a good few days post surgery!
“The operation was a complete success and a year on we are down to only visiting clinic once every six weeks. Following discharge from hospital, we were required to attend a clinic in Bristol every Monday and another clinic in Cardiff every Wednesday and Friday for six weeks.
“One year post-transplant, life is pretty great! Dylan is a happy, healthy young man and is leading a full and normal life with no dietary restrictions and only a few tablets in order to avoid his body rejecting the kidney. I have completely recovered and feel better than I have ever felt.
“To be able to help your child in such a huge way is all any parent wants. I feel completely honoured and humbled to have been able to do this and am in complete awe of the wonderful staff that were involved in the whole process along with the huge support from brilliant family and friends.
“The new opt out system, in my opinion, is wonderful. Initially it means so many more people will discuss their wishes with their loved ones. It makes the whole decision making process, in the tragic event of death, an easier process.”
Most young people like ourselves are fortunate enough to be in perfect health and the notion of transplants would not even enter our heads as it is not as widely talked about in the media as other conditions. If you are in favour of organ donation, why not take a couple of minutes to put yourself down on the register. It is quick, easy and, in the event of your own death, your wishes on the matter are known.