We hear from Hilary Patel, our newly appointed Chair for the Organ Donation Committee, who is a King’s liver transplant recipient, about her transplant journey:
"It's Organ Donation Week and it has a particular resonance with me, which is in part why I was delighted to be asked to be the Chair of such a vital committee.
"In 2002, at the age of 22, I was diagnosed with what is now known as Primary Biliary Cholangitis (PBC). It was perhaps more unusual for someone my age to be diagnosed with PBC but I was lucky that my local gastroenterologist recognised the markers in my blood tests and knew who to refer me too – the Liver Unit at King’s, one of the world leaders in liver care.
"I lived with the disease, largely with only subtle symptoms, for over a decade but eventually I was put on the liver transplant list in autumn 2015. What followed were 10 unsuccessful attempts to find me a suitable donor, including a pretty severe case of sepsis and organ failure, which was only recognised because the registrar who came on shift while I was in resus in my local A&E had done a placement at King’s in the Liver Unit, and whom I credit with saving my life that day.
"But it was 11th time lucky for me and I was successfully transplanted on 5 December 2015, by Mr Menon and a great team of clinical and nursing staff. I have been well ever since thanks to the care at King's.
"Thankfully, my journey is fairly unusual and most people are transplanted within a few times of a suitable donor being identified. And while it was certainly exhausting and scary at times, the experience gave me the privilege to really understand the fine spiders’ web that is the organ donation system – each part working together to make an incredible, finely woven, yet very delicate, whole.
"I am also acutely aware that that system only works due to the generosity and bravery of donors and their families who are willing to pause their grieving to think about helping to save the lives of complete strangers. It is with this in mind that I will be working with the dedicated and brilliant teams here at King’s College Hospital to ensure the organ donation system remains an excellent, respectful and compassionate service, of which we can all be proud."
What you can do
Families are always involved before organ donation goes ahead, so we encourage everyone in the family, whatever your age, to have a conversation about organ donation, so that when the time comes your family are certain about what you want. That conversation could be the most powerful thing you ever do to help save lives.
Do you want to make a real difference by being an organ or tissue donor after your death? If so:
- Join and register yes on the NHS Organ Donor Register
- Tell your family and friends that you have joined the Register and want to be a donor.
We understand that you may have questions about whether your faith or beliefs affect your ability to become an organ donor. Read about organ donation and your beliefs.
Why does ethnicity matter in organ donation?
For many patients in need of a transplant the best match will come from a donor from the same ethnic background. Kidney donors and recipients are matched by blood group and tissue type, and people from the same ethnic background are more likely to have matching blood groups and tissue types.
Although the law around organ donation has changed to an opt-out system in many parts of the UK, your family will still be consulted if organ donation is a possibility.
Leave them certain
If you want to be an organ donor after you die, it's really important that you talk to your loved ones and make sure they understand and support your organ donation decision. You can also register your decision on the NHS Organ Donor Register.
If you decide not to become an organ donor, you can still help your family through a difficult time by talking to them about your organ donation decision now, and making sure they know what you want. You can also register your decision on the NHS Organ Donor Register.
Get the facts about organ donation
Get the facts about organ donation to help you make an informed choice and then talk to your loved ones about your decision.