Leave them certain: talking about organ donation saves lives

Living through a global pandemic has brought home just how fragile and important our health can be. With the lifting of restrictions, many people will enjoy a return to more normal times. For others living with long-term health conditions such as organ failure however, life is closer to a permanent lockdown.

This week is NHS Organ Donation Week, in which the NHS and charities encourage people to register, and talk with their families about their wishes. Before last year, I didn’t know much about organ donation until it affected me personally.

My own experience of organ failure happened quite suddenly last year. I was a 27 year old with no previous health conditions, when I began to feel queasy and fell increasingly ill over a period of several weeks until I was hospitalised. I was told that my kidneys were irreversibly damaged as a result of a rare auto-immune condition, and I later found out that my heart was also weakened.

Living with organ failure is restrictive in a number of ways. I am dependent on dialysis, a machine to clean my blood, five days a week in order to live. This can be exhausting and it is difficult to remember what it was like not to be tired all of the time. I follow a restricted diet and can drink very little fluid, only small sips of water throughout the day. I can’t travel or walk too far without feeling breathless.

Fortunately there are things I can do to keep happy: I can walk small distances to the park and enjoy the fresh air, spend time with loved ones, and I recently returned to work in a supportive team in the Civil Service. But I do miss the freedom of my old life, and I know that the only way I can get it back is through a kidney transplant.

Organ transplantation can involve a living donor or a deceased donor. Each year across the UK around 1,000 people donate an organ — a kidney or part of their liver, to someone else, whilst they are alive. Living donation makes up a third of all kidney transplants in the UK and offers the best chance at a healthy transplant. An increasing number of people are also donating altruistically to strangers. According to NHS Blood and Transplant, the number of altruistic living kidney donors in 2019 surpassed 100 for the first time in five years.

As I do not have a suitable living donor, my next option is the national waiting list for a deceased donor. Unfortunately, the average waiting time for a kidney from a deceased donor is 2 to 3 years, with several thousand people on the waiting list. For BAME patients, the waiting list is even longer due to a chronic shortage of donors. You could save or transform up to 9 lives through organ donation.

You may have heard that last year, the law around organ donation in England changed to an ‘opt-out’ system. This is a hugely positive change that will enable many more organs from deceased donors to be transplanted. But although the system has changed, organ donation remains a personal choice, and families are still consulted before donation goes ahead. For many families, making a decision where the deceased person’s wishes are unclear is deeply distressing. Less than ½ of families agree to organ donation going ahead if they are unaware of their loved one’s decision to be a donor. This rises to 90% when the decision is known.

This is why the NHS is still asking people to register their wishes online, and to discuss the issue with their families to ‘leave them certain’. This means that, whatever a person’s decision, their family will be supported by knowing.

Organ donation is one of the most personal decisions, and there are many reasons why a person may or may not decide to be a donor. I can only draw from my own experience in saying that donation gives the gift of life to thousands of people, and enriches the lives of their families and friends.

You can register your wishes online at: https://www.organdonation.nhs.uk/register-your-decision/

You can consider donating an organ to a loved one or someone you do not know by visiting www.organdonation.nhs.uk/livingdonation for more information.

You can consider giving blood which is an amazing gift to people who need it in an emergency or for ongoing medical treatment by visiting www.blood.co.uk

Thank you,
Alex