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.

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They think it’s all over

As well as the World Cup, National Transplant Week is over, and it’s the first one we haven’t been involved in since we started this Antarctic Odyssey thing.

I’m disappointed, but not entirely surprised; things have become a little strange this year, with the Transplant Trust, and we’ve been wondering what we should do; what we can do.

Time for some re-evaluation – not least with what this blog is for.

The Hjärta is delivered

The Hjärta has landed! Anders Jonasson of the Box Whisky, the Swedish malt whisky company hands over the bottle of Highland Park “Hjärta” to Cim in Östersund. This special bottle of whisky is a gift from Cim and me to Cim’s brother Jonas, to ceebrate the five years since Jonas donated a kidney to Cim.

The Highland Park Hjärta arrives in Östersun

Anders Jonasson hands over the Hjärta to Cim

The Hjärta, which means “heart” in Swedish, is a limited edition bottling for the Nordic market and seemed like the perfect choice for Jonas. You’d think, being made for Swedes it would be easy to get hold of in Sweden. Oh no…

In fact, this bottle was imported to Norway by the drinks company Maxxium, and bought for us by Jonathan di Blasi of Leikanger, Norway. Jonathan’s colleague Thomas drove it to Stockholm, handed it over to Angela d’Orazio of Mackmyra Whisky. She gave it to Tore Forsgren, who was driving north for Christmas, however, not to Östersund.

Luckily, through Angela’s whisky connections, she contacted Anders Jonasson who’s mum lives in the same street as Jonas, and he was driving up from Kramfors to Östersund, just at the point where he could make the pick-up from Tore. So, finally on 29 December, the prized, and much-driven bottle eventually finds its way to Jonas, who promptly declared it was too precious to drink. Of course, I was not going to listen to that!

See the beginning of the story:

5 Years since my last dialysis – Thank you Jonas

Today Jerry and I are celebrating the 5th anniversary of my kidney transplant! Today exactly at this time I and my brother were under the hands of two separate transplant surgeons and their teams getting my brothers kidney out and then walking the corridor with his kidney in a bowl, to then transplant his kidney into my bo…dy…it completely changed my life…and Jerry’s as well.

I remember a few hours before the transplant, I was doing my very last dialysis and my brother was with me, he had never seen me doing my dialysis before. We didn’t say very much, but I felt the urge to say something, I wanted to thank him for what he was going to do within a couple of hours, but I knew that no words in the world could express what I felt. But I started to say something along the line of thanking him…he looked deep into my eyes and touched my hands and said “I know”, you don’t need to say anything”, I know.

I love you Jonas with all my heart.

Celebrating Jonas: 5 Years since Cim’s Transplant

December 8 is a happy anniversary for Cim and me. Five years ago today, Cim received a kidney from her brother Jonas, in St George’s Hospital, Tooting, South London. To say that this event – this extraordinary act of brotherly generosity – transformed our lives is about as understated as you can get.

I had my hair cut. When I got back to the hospital, Jonas had just come round from the operation, and it made me very happy that he was well enough to compliment me. I knew then, that everything would be fine. And so it has turned out to be. Tack Jonas!

Highland Park Hjärta

Skål Jonas! Thanks from me.

I will be acknowledging Jonas this year by sending him some malt whisky, this time a special bottling from the Highland Park distillery on the Scandinavian-influenced Orkney Islands. The bottling is called “Hjärta” which is the Swedish for “heart”. I could think of only one name that might be more appropriate, but somehow Njure* doesn’t sound as appetising.

Cim and her brother continue to be well. Cim was even described as “super-normal” by one renal doctor. We will spend new year with Jonas, his partner Maria and their one-year-old daughter Stella. I hope he saves me a dram!

As well as the gratitude I feel – we  feel, I am also glad. As one of my friends put it, progress often gets a bad press, but I’m glad that such a serious condition as renal failure can be treated so successfully. Grateful, because Cim is one of the lucky ones never having to sit on a waiting list waiting for an organ,

It would make us even more glad if you register for the organ donor register. Thanks to all of you who have already done so.

*Njure = Kidney, if you hadn’t guessed

I Hope You Know: Campaign Update From Sarah Springett of The Floe

Sarah Springett of the UK band The Floe has just posted an update and message about the “I hope you know campaign”. It starts:

“Firstly, thank you all once again for your incredible support. Since the ‘I Hope You Know’ single campaign was launched on November 9th (a year to the day since I donated a kidney to my boyfriend Paul) there has been an incredible wave of generosity and encouragement from every angle. The national media have really helped to promote the story, charities and organisations have spread the message on our behalf, and individuals have done a fantastic job of championing the cause. Special thanks to The Transplant Trust for their continued support and guidance.

I Hope You Know Campaign

Click to go to the I Hope You Know site and buy the single

To every one of you who has signed the NHS Organ Donor Register, downloaded the ‘I Hope You Know’ single, visited the www.ihopeyouknow.co.uk site, joined the Facebook cause, or passed on the info to friends/family/colleagues as a result of the campaign – thank you thank you thank you. ‘I Hope You Know’ what a difference you have personally made.”

The full message is posted on the band website here, and their Facebook fan page.

The campaign, if you remember from the earlier post, started with the release of the single “I hope you know” by The Floe with the aim to raise awareness of organ donation and get many more thousands of people to join the register.

Proceeds from the single go to The Transplant Trust. You can still buy the ‘I Hope you Know’ single, and you if you’ve done that, please share the link with your friends. It all makes a difference.

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