The Gift of Life, organ donation.

Organ Donation has been in the media a bit more over the last month or so which is good. I must say I thought this years National Transplant Week in September wasn't as good as previous years, very little media coverage nationally. Such a shame really as donated organs continue to be in desperately short supply and people continue to die waiting on the list. There are many "good news" stories that could have been shared.

        This week Wales changed the way it's Organ Donation System works they've gone to an opt-out system. This essentially means if you are over 18 years old and have been living in Wales for over a year your details are automatically on the organ donor register. If you do not want to be an organ donor you can opt-out. Interesting to see what percentage of people do choose to opt out. In a year it will be good to see if this increased the number of transplants performed. I think the hard bit is it's nice to think of organ donation as a gift that the person whose organs you received wanted you to have them, they made that decision. Whereas this may leave you thinking they'd forgotten to say no ! Whichever way you look at it though we need to continue to promote organ donation and the register as much as we can. So people aren't dying waiting with the odds of finding a suitable match in time stacked against them. Such a lottery but what better prize is their than life, without life there is nothing...,...

When questioned around 96% of the British public agree with organ donation but only 33% of us have bothered to sign up. Shocking statistic really, as its so easy to register these days. Most of us spend time on the internet daily and it literally takes two minutes to register on line. I can't see what anyone's excuse is ! You're more likely to need an organ transplant than become a donor. Being on the register doesn't mean some body snatcher is going to harvest your organs before you're dead. Think about it if you were dying and the only chance you have of surviving is an organ transplant what would you do ? Say no because you hadn't bothered to sign up yourself ? I expect you'd beg to get listed and start campaigning for more organ donation awareness like the rest of us flung into the transplant world. 

         I signed the organ donor register in 1989 it seemed a good thing to do. I carried my card around in my navy leather Filofax (the iPad of it's time). Never thinking that organ donation would touch my life in such a huge way. Fast forward to 2002 my daughter is dying in the Freeman Hospital Newcastle. Now organ donation got real. I was waiting for a like minded individual to say yes to their toddler being an organ donor. I didn't think it would happen so I didn't want to hear too much about the procedure and aftercare. Why worry about something that may not become your reality? Horrible watching your child fade away from you, looking at them covered in tubes and wires, cold and lifeless in a huge hospital bed, with the sounds of the ventilator and infusion pumps. Willing the monitors not to alarm, watching the screen for any changes. Knowing that your child's survival depends on another dying, it's just bloody hideous. I know the person who donates their organs is brain stem dead and has no hope of survival, only machines keeping them "alive" but it's still hard to think about. Thankfully after 24 hours on the list Eloise got her transplant, but sadly this meant another little girl didn't survive her illness.

          I totally appreciate how lucky we are that Eloise got her second chance of life, I often reflect on it and how life could have been. I wish everyone who needs a transplant got their chance. Sadly they don't. Recently a little girl whose story I'd been following passed away, she was a similar age to Eloise at the time of transplant, so a toddler. She waited too long and i.v medication could no longer keep her stable so she had a Berlin ( mechanical) Heart fitted. Sadly she suffered a catastrophic bleed on her brain a short time later and her parents made the brave decision to let her go. Then there's another little boy again a similar age he's been in hospital since March on a Berlin Heart waiting for his call. Of course 13 years ago Berlin Hearts weren't available so not an option to keep Eloise bridged until a suitable heart became available. She was due to go on ecmo the following day so at best had two weeks to live at that time, but again ecmo has risks. 

      This week we've all been saddened by the loss of a lady called Leah. She had her heart transplant in 2010 and later she was given the go ahead by her transplant team to try for a baby. Sadly 5 months into her preganancy she started having complications and fluid around her heart. In the end baby Aria was delivered early as Leah's condition deteriorated. Leah's heart was badly damaged so she was listed for a second transplant. She never got to see her baby girl as the decision was made to turn off Leah's life support. 

        These sad stories are the reality of the transplant world, it's harsh . I was talking to a couple of work colleagues this week about these stories when someone asked what programme this was on. No TV programme just people I know through peer support groups such as Heart Transplant Families UK . I do think Channel 5 did an excellent job with their three part series Gift of Life. Such a shame it was on at 10pm , I'm sure many people missed it. It showed transplantation in a non sugar coated way, nothing was hidden. It was very sad in places as a couple of the people followed passed away but up lifting to see how lives are transformed by organs that would otherwise be cremated or buried with their original owners ! I can't think of a better legacy to leave behind than life ! Can you ?