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:

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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

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.

British Transplant Games: In the Swim

We have a friend: let’s call him Carl (well, it is his name). Carl has just won bronze in the 50m freestyle at the Swimming Gala at the British Transplant Games.  That short but intensive training paid off.

Medal winners Carl, left, with Alistair and Mike

Medal winners Carl, left, with Alistair and Mike

Cim got to know Carl when they were both in St. George’s Hospital Tooting. Carl had just had a kidney transplant, Cim was just about to. There are easier ways to make friends, but that’s what happened to us.

I’d like to think we had some hand in helping him on his way to his bronze medal. We encouraged him to take part, we listened to his worries about training and his paranoia about finishing last, and we shouted ourselves hoarse when the starter’s gun went off. You could say we were a team. And in return, Carl inspired us.

That seems to be the way things are at the Transplant Games, all over the Coventry Leisure Centre, groups of people like Carl and us from different parts of the country, representing their hospitals, swimming for gold. At least, that’s what it looks like, but really, they are representing the possibility of what life after a transplant is about.

While we were waiting for Carl, we talked to the parents of another swimmer, Ben, who won every race he entered – the Michael Phelps of the games. Luckily for Carl, he was in a different age group. Ben had played water polo for England as a young lad and was about to be picked to go to the Olympics when he got leukaemia. A bone marrow transplant saved him and once more he’s tearing up and down the lanes doing what he does best.

Finally, it came to the 50m freestyle. Carl looked like he was going to come second, but the last 10 metres seemed longer than the first 40 and he slipped to third. Anyway, he seemed to come out satisfied, jokingly threatening to blame his anaemia nurse for not giving him the iron injection that he claims would have given him the staying power to take him up a medal position.

Carl has the Games bug. He knows what he needs to do for the Bath Games in 2010.  Perhaps I’ll go in for the donor run. Maybe even Cim will do something. You want to get close to that 30 second mark? We’re here to encourage you and Ben and all those from Exeter to Glasgow. Cheering you all on. So much for the loneliness of the short-distance swimmer.

Coming soon: the meaning of poignant and what we had for dinner.