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.

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

Apple’s Steve Jobs ‘Admits’ to Liver Transplant

You don’t normally expect personal revelations at a company bash, but if you work at computer giants Apple, and your boss is Steve Jobs, maybe you get used to them. But at the recent Apple conference, where big things were expected, nobody was quite ready for Jobs’ announcing his recent successful liver transplant.

Here is an extract from the Guardian blog reporting direct from the conference:

6.04pm: The cheering and clapping has gone on for a good minute or so. Jobs, dressed in trademark black top and blue jeans, starts talking.

“I am VERY happy to be here today with you all. As some of you may know, about five months ago I had a liver transplant – so I now have the liver of a mid 20s person who died in a car crash and donated his organs. And I wouldn’t be here without such generosity. So I hope all of us can be as generous and elect to become organ donors.”

So, why did he say “as some of you may know”? How come Steve Jobs didn’t go public earlier about his liver transplant? It was widely rumoured to have happened, but not reported at all why he wouldn’t “admit” he’d have one.

I talked to Cim about this, because in my ignorance, I would have thought only good could have come of reporting a successful celebrity transplant. “Organ Donation, as endorsed by Steve Jobs. Register to be a donor on iStore” and so on.

Cim reminded me what it was like for her to have end-stage renal failure: she didn’t want to go public either. She only told family and close friends months before the transplant. Why? she thought if she admitted how ill she was, she would fall apart… Dealing with it privately was Cim’s way of dealing with it at all.

And that’s probably just as true for Steve Jobs. Despite his very public image, he was still entitled to deal with his life-threatening condition how he chose. And part of his dealing with it was keeping quiet for five months and then announcing it to the world when the world was waiting for the new iPod Nano. I’m with you, Steve.

You can find the extract in Bobbie Johnson’s blog in the Guardian.

What would make you actually register as an donor?

As Jerry wrote earlier, on Wednesday morning’s BBC Breakfast TV they talked about transplants and organ donation in the UK, and how we need more people to register as organ donors. As always – my ears get very big, as we say in Swedish, which means I listen in a way that I rarely do, but this topic is really close to my heart because I myself have experienced facing a downhill road towards death before eventually receiving a kidney from my lovely brother, and I now live a healthy super-normal life.

One of the questions they discussed in the studio with Vashti Poole from The Transplant Trust and BBC Breakfast’s Dr Rosemary Leonard was whether the UK should have a opt-in or opt-out policy. At the moment we have an opt-in policy which means that you need to actively register as a donor, and opt-out means that everybody is automatically registered as a donor and you have to actively say no if you don’t want to be a donor.

Dr Rosemary Leonard said that GPs need to understand that some people are really concerned about what would happen to them if they were dying. They are worried that doctors and surgeons will hover around waiting for them to die so that they can harvest their organs.

I think that we (Transplant Trust and all the volunteers passionately working to raise the number of people on the organ donor register) shouldn’t even go there with these people. There is no point trying to persuade them to be donors. The focus should be on all the people that actually want to register but have never come around to doing it.

My question to you – if you are somebody who actually wants to register as an organ donor – what can we  do to help you to take the action to register?

Transplant Trust on BBC Breakfast

Vashti Poole from The Transplant Trust

Vashti Poole from The Transplant Trust

I felt a pang of guilt as I switched on to BBC Breakfast this morning. No, not because I should have been doing something less boring instead, but because there, on the screen was Vashti Poole from the Transplant Trust. “Still haven’t finished the Transplant Games write-up, have you” she seemed to accuse me as I choked on my yogurt.

And that radio bloke they interviewed on film – no idea who he was, but he brilliantly explained what it’s like to wake up from a successful kidney transplant. He mentions the Transplant Games and the poignancy of watching the children’s sprints, using the word I mentioned at the end of the last blog entry. Yeah, yeah I get it; blogging is about keeping up to date.

I will come back to that.

BBC Breakfast's Dr Rosemary Leonard

BBC Breakfast's Dr Rosemary Leonard

So, my blogging guilt aside, it was a good piece with Vashti and BBC Breakfast’s house doctor Rosemary Leonard being interviewed on why people should sign up to the organ donor register, why perhaps people don’t, and discussing questions such as should we have an opt-out scheme like they do in Spain?

Just as in the Lifegivers programmes in April, it seemed to generate a lot of live feedback. Not surprising, I suppose – it’s an emotive subject that affects a lot of people. The Transplant Games brought home to me just how many lives are touched through the transplant question, whether with the joy of the new lease of life that a transplant brings, or the tragedy of being part of a family that has lost someone dear.

I’d love to post a link to BBC iPlayer stream of the programme, but there isn’t one. I hope I will be able to make some footage (byteage)  at some point. In the meantime, thanks Vashti, both for waking me up and for being out there with the message as the nations wakes up.

Thank you to everybody who visited these pages unprompted today (and to those who continue to visit). Thank you especially for signing up to the UK NHS Organ Donor Register.

Crown Princess Victoria’s Fiancé in Kidney Swap Drama

Sorry about crap headline, but it’s all true – apart from the “drama” bit.

Sweden’s Princess Victoria’s husband to be, Daniel Westling, has had a kidney transplant, I found out today from one of my Swedish friends. His donor was his father and it all went well, so no drama.
I mention it here because it is a high-profile case in Sweden involving a live donor, and what with our Swedish connections, I thought we could do something with it.

For Swedish speakers, here’s the original link in the regional newspaper Sydsvenskan: http://tinyurl.com/p8tedr
English extract:

STOCKHOLM. Crown Princess Victoria’s fiancé Daniel Westling underwent a kidney transplant on Wednesday.

A spokesperson said it is a relatively risk-free operation.

– Daniel Westling has today undergone a kidney transplant at Karolinska hospital (Stockholm) and is doing very well. the trust’s press secretary Nina Eldh told (agency) TT.

The donor was Daniel Westling’s father Olle Westling. The operation was successful and without complication. Olle Westling was also said to be doing well.

The reason for the transplant was a congenital but not hereditary condition that has lead to reduced kidney function. According to the trust, they have known of the eventual need for a transplant for quite a while.

Jerry Bartlett commented: – donor and recipient may both be doing well, and that’s great, but now they’re coming off the medication, it will hurt like crazy. Nowadays, the donor will likely have keyhole surgery, which reduces the recovery time, but the donor is not out of the woods for a long while. The first year is critical.

As for the “relatively risk-free” process – it’s not the operation that is the problem. Don’t get me wrong; I’m glad we live in an age where this is routine, but it’s not like having your tonsils out. Kudos to the Dad for his generous gift. Like Cim’s brother who donated to Cim – a real hero.

Well, you probably guessed I wasn’t quoted in the paper, but that’s what I would have said, if asked.