Hope Barker’s mum, Jocelyn, developed PH after the birth of her daughter – and when Hope turned 13, she underwent a double lung transplant. Here, Hope shares her family’s experience – and thanks another family for their brave and selfless act in donating their loved one’s organs.

“There were two false alarms before it actually happened. In these situations you can go as far as being prepared for the operating theatre before the doctors realise that something is wrong with the donor’s body. Those organs, then, are not transplantable and the patient goes home and carries on waiting. That’s just the nature of the game. The first time, I was twelve years old. My dad and brother Caleb went to the hospital with my mum and I, too young to join, was left with friends. It was the middle of the night and I sat up until the sun rose reading Utterly Me, Clarice Bean.

Hope Barker (right) with mum Jocelyn, dad Cameron and brother Caleb

The second time I am told I went to the hospital with my parents. Although almost a year had passed since the first incident, I have no memory of this. It finally happened in May 2008. We had said goodnight and gone to sleep, we thought that morning would come as always, and it did; except on this morning my mum wasn’t with us, she was lying on a hospital bed receiving a new pair of lungs.

Statistics show that at the end of December 2015, there were 6,635 people on the transplant waiting list in the UK. That means that there were over six thousand mothers, fathers, brothers, sisters, daughters and sons living with the reality that ‘tomorrow’ might not come. Of course, transplantation isn’t the magical cure for these people. If we consider lung transplantation alone, just over half of those who undergo the procedure will survive a further five years. Even before that you have the arduous recovery in Intensive Care Units, the suppressed immune system that can result in hospitalisation for common infections, and the mental strain on both the patient and their family. You learn to take nothing for granted, and whenever you go to sleep you are reminded of what ‘good night’ could really mean. All of that, though, is worth it because, for as little time as you get before your body rejects the foreign organs, it’s still more time that you get to live.

This is where the really tricky part comes in, and this is the part that nobody wants to talk about, because for my mum to live somebody else had to die. Katie was in her mid-forties and was a perfectly healthy woman leading a perfectly normal life. We don’t know how she died but we know it was instantaneous and unexpected, probably a brain aneurism or something similar. This is how people who are able to donate their vital organs usually die – it means the rest of the body is largely unaffected and is viable for transplantation. Katie’s parents have sent us photographs of her, and have written a few letters to my mum over the years. I can’t begin to imagine their pain and I will never stop thanking them for the sacrifice they made for us – because it is a sacrifice.

Jocelyn Barker and family Hope, Caleb and Rev Cameron

Even if you are signed up to the donor list your relatives can opt out for you at the last minute, and many do. It seems an impossibly cruel question to be faced with at such a difficult time in your life: “Hi, your daughter is dead, can we have her heart/lungs/retina/skin/kidneys (the list goes on) please?” Yes, it is cruel, and I know I’m biased but I can’t help but see the necessity of it and of transplantation in general. Organ donation isn’t something we are taught about in school, it’s not an issue that we discuss regularly and that is the problem. While 90 per cent of people say they support organ donation, just 33 per cent are on the NHS Organ Donor Register. That leaves us with 57 per cent of the population who are happy to donate their organs, but may end up not doing so for absolutely no reason at all. In 2015 we saw the number of organ donors fall for the first time in 11 years. Less people are donating their organs than ever and that’s because we aren’t talking about transplantation.

Nobody wants to talk about death, nobody wants to think about what’s going to happen to their body when they’re gone but the truth is, it’s selfish not to. Most people I try to discuss the issue with sweep it aside with a non-committal, “oh yeah, I’ve been meaning to do that.” I suppose if it hadn’t happened to me, I probably wouldn’t care either. We all have our own lives, our own problems, and we all mean to get round to it eventually – but that’s not enough. In the past few months we have been reminded of what we can do as Wales formally introduced the opt-out system. This is a system by which everybody is automatically registered to be a donor and those who have an active problem with it can choose to opt out. This is something my mum and I have been campaigning for and talking about for years and it makes perfect sense. Nobody is forcing you to donate, nobody will make you do anything against yours or your family’s wishes but it eradicates that fundamental laziness.

I don’t want to change the world, I don’t expect this article to enter into parliamentary discussions (as much as I would like it to), all I want is for people to fill out a two minute form and register as an organ donor, to talk to their family and make them aware of their wishes. To stop saying they’ll get round to it, stop saying they’ll do it tomorrow, and if they’ve already registered then stop thinking they’ve done enough. We all need to talk to our friends, talk to our family and let them know they can do it too. I know that nobody wants to talk about death, so why don’t we talk about life, because that’s what your donation could mean for somebody.”

If you would like to share your family’s PH story, please email editor@phauk.org