We often think about what should happen to our assets when we die, who should care for our children, or perhaps even our wishes for our funeral. However, one list of assets that we should all be thinking about is our organs.
Organ donation isn’t always the easiest topic to think about, let alone talk about, but you can bet that it will be a lot harder for family members to make that decision, at what is already an impossibly difficult time, if they are not aware of our wishes.
Like so many others, I have carried my Boots Advantage card, with the organ donor logo proudly shown in the corner for many years, but had not stopped to have a discussion about it with my loved ones. That is, until a young man I know faced his own donor journey and brought the topic more firmly into my life.
Charlie was diagnosed with Bilateral Wilms Tumour (kidney cancer) when he was just two years old (2000). The first chemotherapy drugs used did not agree with Charlie and they caused permanent liver disease. Whilst he was, thankfully, declared clear of cancer in October 2001, he has been monitored by liver specialists at Kings College since he was seven, having been diagnosed with portal hypertension (an increase in the blood pressure in the portal vein, which carries the blood from the bowel and spleen to the liver). They monitor his liver function regularly and until recently he’s remained pretty stable.
In 2016/17 nodules in his liver started to grow and change, with doctors concerned that they were potentially cancerous. Charlie also developed portal thrombosis and so his medical team decided to list him for a liver transplant.
He’s been waiting for a little over a year. Since the summer, Charlie has received the call to say an organ is available three times, each time to be cancelled at the last minute. Charlie and his family are living their lives on hold, and he was recently admitted to hospital with Hepatic Encephalopathy. This is where toxins in the body are not filtered properly by the liver and cross the blood-brain barrier, leaving him confused, feeling wobbly, forgetful, muddled, very tired but unable to sleep longer than three hours at a time.
Charlie was then kept in for three days while they treated him. They said that it was Grade 1, mild. Grade 4 is when you are unresponsive in a coma. Charlie deals with everything that life throws at him with good humour and bravery, perhaps summed up when the consultant was so impressed with how eloquently he could describe the symptoms that she asked him to give a talk to a group of junior doctors!
As of November 2018, there are 6,150 people on the list waiting for another chance at life. Sadly, many will not receive the organ they require in time.
Hopefully you will have the opportunity to spend time with loved ones this Christmas. Having this conversation could save your family a difficult decision should the worst happen.
If you would want all or any of your organs to be donated, you can formally register this wish by visiting www.organdonation.nhs.uk/register-to-donate.This site provides further details of the process and options. If you have registered, donation staff would be able to see that you have registered ahead of discussing options with your family. This may help your family in making a decision, and to reconcile themselves with your decision, especially if you have already had the important conversation.