Cardiac death organs now “good” for transplants

Awoken with a start at 6.55 AM by the phone. At that time of day it’s usually bad news, or somebody in Sweden not thinking. Today, it was BBC Surrey Radio.

Phone voice: “Cim, can you do an interview in 20 minutes with Nick Wallis on his breakfast show?”

Cim: “Of course”.

Cim has of course, been interviewed by Nick Wallis on BBC Surrey Radio before, so it’s a good bet that this is about transplants. It seems Cim is the go-to ‘expert’ now.  We leave it at that, and sure enough they call again at 7.15 and Cim is live on air.

Kidney transplant policy change could save hundreds

Patients are now often offered a kidney from a donor whose heart has stopped

Nick Wallis: “So Cim, what do you think this latest piece of research will mean for transplant queues?”

Cim: “Er…”

Breaking overnight news had blind-sided us. This is the story that a Cambridge University study has now found that kidneys from people who’s hearts have stopped can now be used for transplants. That may sound a little odd, but previously, only brain-death kidneys could be used. This post’s headline might sound like a death metal album title, but it means a breakthrough, and fewer people will die waiting for a kidney transplant.

As Cim gets to grip with the interview, she agrees with Nick that this is Good News.  It means there will be more kidney transplants and more people will have the chance to leave a normal life again.

The early morning phone call can mean good news, then, and for those on the waiting list for a kidney transplant, that phone call can now come sooner.

Hear the interview on BBC iPlayer until 27 August. From 17 minutes in.

Do you want to do one good thing today? Go with The Floe

I bet you think I’m going to ask you to sign up for the organ donor register. Well, I’m not. “But just a minute” (I hear you say), “Aren’t you in the middle of a campaign to do that? You were on the radio last week…” Well yes, but today I’ve got something else to ask you.

Today I’m asking you to buy a love song. And if you’re not quite up to that, I’d like to encourage you to fwd, share, tweet, post, or even talk to somebody about this song “I hope you know”. It’s no ordinary girl meets/desires boy (partner) drama.

We often get asked what can we do to help your cause? After all, you can only sign up once, and although there’s donation (I don’t mean the Ultimate Donation – just money), people want to give of themselves and do something helpful without having to die for it. It has been quite tricky to know what to say. Until today… (Good grief, I sound like Jeremy Clarkson.)

Sarah Springett of The Floe

Sarah Springett, lead singer of The Floe

You see, Sarah Springett is the singer in The Floe. A year ago, 19 years after the fall of the Berlin Wall, she donated a kidney to her boyfriend. She didn’t make a song and dance about it, she just made a song, it’s called “I hope you know”. And it’s about the love that would make someone give a loved one a new lease of life.

She was on BBC Radio 4 Woman’s Hour to talk about it. (Surely Top Gear is only a matter of time.)

Then they made a website and a video, and the proceeds are going to The Transplant Trust, and hopefully it will do something to balance the stats. If enough people download it so that it gets into the charts, then there’ll be a huge amount of exposure.

Look, I’ll stop going on, why don’t you listen to Sarah talk about it – it’s her song, and she does it much better than me. You can go to the download sites or perhaps even get a real CD.

And remember, if you just pass the word on about the www.ihopeyouknow.co.uk website, by whatever means necessary, you will have done your One Good Thing.

And on that (blonde) bombshell, I’ll hand you over to Sarah.

www.ihopeyouknow.co.uk

Our job: Find out Why People Would Receive an Organ but Won’t Sign Up

We were interviewed recently on BBC Surrey Radio as part of a new campaign to encourage people to sign up to the NHS organ donor register. The interview as posted unfortunately didn’t cover the whole interview, I think the last few minutes was cut off for some reason.Until we get the permanent download, I’d like to say what was missed, because it reveals the point of the campaign.

I said that we know that there are many people out there who want to register but never get around to actually doing it – so I asked how we can help them to do that.

Nick Wallis, the BBC Surrey presenter who interviewed us, mentioned a couple of times the statistics – that 95% of people would take an organ but only 27% has registered to donate.

It is up to us to do something about balancing that statistic.

Sign up to the organ donor register here.
Thank you!

Interview on BBC Surrey Radio

If you got stuck in traffic this morning in the Guildford area, I must apologise.  The extra chaos was no doubt caused because Cim and I were called in to be interviewed live from the studios of BBC Surrey Radio. Rush hour?  Maybe, but traffic is not as bad on interview-free days.

We were on the radio to help publicise a new campaign to get people to sign up for the organ donor register in the UK. Apparently, there has never been an out-and-out campaign with the single aim of getting people to, well, sign up – it’s always been a “by the way…” Can that be true?

Anyway, a very nice lady rang Cim and fixed us up to be on Nick Wallis’ Breakfast show. And despite the traffic, we arrived in time. You can hear us on BBC iPlayer; our bit starts at 2hr 39 mins. goes up to the traffic news, and there’s another snippet at 2hr 55, which unfortunately cuts me off in full flow. Be quick! It’s only up until Monday 9 November, 10 AM GMT.

BBC Surrey Radio's Nick Wallis and Cim

BBC Surrey Radio's Nick Wallis and Cim

Nick the presenter was really nice and natural, and asked just the right questions so that we could get our message across, which is: it’s a great idea to sign up for the organ donor register because if something terrible happens to you, you could make a huge difference in up to 9 people’s lives and your life won’t have been in vain.

If you have already registered, thank you! (Please make sure your loved ones know.)
Otherwise, to register go to: http://www.organdonation.nhs.uk

An “Ordinary” Job: Making Someone “Supernormal”

The best description I have heard of Cim so far: “Supernormal”. Dr Malcolm Brown of  Astellas Pharmaceuticals came up with that during our presentation on 3 July at the Staines-based pharmaceutical company, near Heathrow. Astellas is the company that makes Prograf, the anti- rejection drug Cim has taken ever since her kidney transplant in December 2004.

Out on the road again with the Transplant Trust charity in advance of National Transplant Week, and an opportunity to give our talk “From Dialysis to Antarctica” – albeit in short form. It’s great to get out there and show people how well Cim is – it’s part of our way of putting something back.

Dr Brown is a former transplant surgeon himself and used this Learning Lunch to introduce the topics of  transplantation to an audience within Astellas that included the transplant side and others. We had an audience of  about 70 Astellas employees volunteering to spend their lunch hour finding out what the Company does in the world.

We were far from the only draw: Vashti Poole talked about the Transplant Trust and there were some very touching videos about the contribution the medication that Astella produces makes to the lives of transplant patients and also the sponsorship Astellas is involved in with foundations such as Tackers, who make possible a skiing holiday for groups of teenage transplant kids.

Very encouraging for us to hear back from Astellas staff  about how seeing a real live former kidney patient has benefited from their products. Somebody said what sometimes seems like an “ordinary” job is given a different perspective when you see how as an employee, they have contributed to the real difference their company has made.

Life Givers, BBC1

Before watching the first two Lifegivers programmes on BBC1, my slight worry was who is going to watch this? As posted previously, Cim and I are appearing on Thursday morning*, so that’s got an obvious attraction; we’re not fooled by the promise of Gabby Logan. But really, is it going to be just those families affected by organ donation?

Nadia Sawalha

Nadia Sawalha

Dr Jonty Heaversedge

Dr Jonty Heaversedge

kate_jones-small

Kate Jones

Giles Thrope

Giles Thorpe

I needn’t have worried. It’s very good – showing people’s seemingly endless capacity for generosity, the resolve they show in getting through a life crisis, and just how much people love their families. You’d have to be made of stone not to be moved. That is the draw for “normal” people.

The purpose of Lifegivers is more than mere entertainment – no matter how life-affirming the stories are. As a viewer, you are encouraged to go on the organ donor register and also to be a blood donor. You can really see what a dramatic difference transplants make to people’s lives – as it did with Cim’s, so let’s hope people are moved to sign up.

The target: 9 million more on the Organ Donor register in four years. That is a big ask. You can help sign up here.

If you have had a transplant, or are somehow involved as a donor, carer or in the medical profession, but part of the transplant online community The TX Space.

Update:
After Monday’s programme, double the number of people signed to the register as did in the previous whole week.

Update 2:
Just got the call from the Beeb that we’re no longer going to be on the programme. This is disappointing for us,  but supposedly, they’re pushed for room. I blame Gabby Logan. Maybe they’ll have us on Pimp My Ride after all.

Live! on the BBC

Did I mention we’re going to be on TV next week?
If not, it’s because I didn’t know what it was going to be, but now I do.

A very nice young lady phoned Cim a few weeks ago and asked if we’d like to be on TV with our transplant/Antarctica story. Cim said it was going to be BBC on a Thursday morning after Easter. Last week we got the travel arrangements: turn up to MTV studios in Camden at 8 in the morning.  What? not BBC  TV Centre then? MTV? Had Cim made the BBC part up? What did MTV want with us?

Now, Planet Jerry can be a little off beam, but Planet Cim is sometimes in a parallel universe, so forgive me for being cautiious. However, looking at the schedule for MTV Thursday morning, I thought it unlikely we’d be on “Pimp My Ride”, no matter how much our car is in need of it.

Charlotte called again and cleared things up. The independent company Leopard films is making a five-part documentary for BBC about transplants. So, that explains that. Presented by Nadia Sawalha and Dr Jonty Heaversedge, the first programme goes out on Easter Monday.

BBC1 9.00 am. Life Givers