Are you a registered organ donor? Did you know, even if you have a genetic condition, you can still join the NHS Organ Donor Register? It’s National Transplant week, and today Lesley, our Patient Support Manager, talks about organ donation, and what AKU patients can donate.

Organ donation is one of the greatest achievements of modern medicine. Transplants can save or enhance lives, but this relies on donors and their families agreeing to donate their organ or tissue.

I Have AKU: Can I Donate?

At our patient workshop in June, we discussed the option of donating your body to medical science. Questions were raised, including whether someone with AKU can donate blood or organs.

The AKU gene is passed via the liver and kidney. Prof Ranganath advised AKU patients not to donate these, but said they can still donate other organs. Anyone registering to become a donor can choose which organs they want to donate by ticking the relevant boxes on the form.

Taking medication doesn’t mean you can’t donate organs or blood either. Not all medication is a cause for donor deferral. Medication is noted prior to donating and, if necessary, further reviewed by a medical practitioner.


Every year around a thousand people die waiting for a transplant. However, only 4% of people regularly give blood, and only a third of us have joined the Organ Donor Register. Statistics released in July in the Organ Donation and Transplantation Activity Report 2014/15 shows the number of transplants decreased by 5% from last year, meaning 224 fewer people received an organ transplant.

Of the transplants carried out, 1,092 were made possible by living donors who gave a kidney or part of their liver, while 3,339 patients benefitted from organs donated after death.

The reason for the fall in numbers is twofold:
• Fewer people died in circumstances where they could donate last year (potential donors 8,157 in 2013/14 compared to 7,450 in 2014/15 a decrease of 8.7%)
• There has been no improvement in the consent/authorisation rate which remains below 60%

In the UK we have an opt-in system for organ donation, and consent is required before organs or tissue can be donated. This can be done by joining the NHS Organ Donor Register, or writing an advanced statement. Organs can also be donated if consent is obtained after death from an eligible person, such as a relative or longstanding friend.

There is much debate over the best donation system. In Austria the opt-out process is a ‘hard’ one, where views of close relatives are not taken into account. In Spain, the process is a ‘softer’ one where relatives’ views are sought. America is similar to the UK, yet still manages to have one of the highest rates of organ donation in the world. There is no global consensus on which system is most effective.

On 1st December 2015, Wales will be the first UK country to introduce a soft opt-out system for organ and tissue donation. The Welsh Government are sending information packs to all households informing them of the change in the law and options. Welsh citizens can choose to opt out after 1st December and can change their mind at any time.

The Facts

• 82% of the population want to, or have considered donating their organs. Only 50% have talked about it to family.
• Only 31% of families would agree to donation going ahead if they were unaware of their loved one’s decisions.
• On average, 3 people a day die needing a transplant because not enough organs are available.
• On average, patients from Black, Asian and Minority Ethnic communities wait a year longer for a kidney transplant than a white patient.

A Personal Story

One family’s loss and grief can be turned in to the gift of life for someone else, and knowing this can give them strength at a particularly difficult time.

Mike, the partner of one of the AKU Managerial team in Liverpool, tells his story and what the gift of life meant to him:

For 47 years, having never been ill or in hospital, always fit, enjoying sport, social life ,work, the kids and holidays, it came as a shock when I got rushed to Warrington General and informed I had early stage kidney failure. No symptoms, no sign of decline, no issues; just normal one day, hospitalised the next. A shock? Yes you could say that! If that wasn’t enough, how do you prepare yourself for the news that your kidney failure is now “end stage” and later today you start dialysis through a neck line……and I mean a NECK line. Yes I was a “Crash Lander”.

So how do you prepare? You don’t! How can you imagine the future without your kidneys- you can’t! The fear of the future, the unknown, the anxiety, the personal failure, all wash over you, and you can’t see where your life will go. What about work, the kids, the house?!

The lifeline is dialysis; not pleasant, never to be looked forward to, but essential to maintain your life. It’s not a “back to normal” life scenario, because your body’s blood is clean then dirty, then clean and dirty again. You never feel right. You are either recovering, or waiting to go on. You see life in 24 hour stages. Good and bad. It’s not just your body changing; your mind, your attitude, your behaviour, your outlook all change. You see life in a different way.

You go from being angry, with a “why me” view, to a ” sod it” you’re not beating me. I’m stronger than this. You learn to fight back, focus on what you can do, not what you can’t. You find the will to win, to succeed, to come out of this better than before. How? The midnight phone call.

The Transplant team are phoning, and asking you to come in, “We have a donor who matches you.” What a phone call. It’s what you have secretly hoped for, but never dreamt it would happen. You didn’t dare hope, in case it never happened. It’s happening!  Bloods checked, theatre, open me up, close me up, and give me the morphine button. I’m back. I’m alive, and now I’m walking and weeing like I used to.

Amazing, remarkable, so grateful, so thankful. You never quite find the words in your head to express how you really feel. Is it guilt I feel, that I survived when someone else gave away their short life for me?  I don’t know.

Its 6 years last week, since I received my two gifts of life from a young man I will never meet. And if I ever did, what would I say to him? Thanks doesn’t really cut it, does it? All I can say, and I’ve only ever expressed it to my wife before, is that I will never forget your name, or the unselfish part you played in my life. Thank you little “H”. Thank you. RIP. And now I’m crying again!

Further information about organ donation and how to register can be found on the NHS Organ Donor website.

If anyone has any questions or wants to find out more please contact Lesley by email at [email protected]