This could happen to any of us. Here you are on a sunny day, running in the park, enjoying the moment, the effort, enjoying yourself and life in general. You work, you go out, you work out, you have two young children, a husband, a family, caring friends. And then suddenly everything goes south.
You start feeling sick. You get some tests, and what the doctor ushers sounds at the same time absolutely surreal and terrifying: you need a liver transplant, because yours is failing fast. If you don’t get it, you are simply going to die.
This is exactly what happened to Liz Schick some 14 years ago. One day she was the picture of health, an active sportswoman always on the move, and the next she was submitted to a battery of medical tests. It took a while to diagnose her rare condition, EHE (Epithelioid hemangioendothelioma), a vascular cancer in the lining of the blood vessels of her liver. Organ transplantation was the only possible treatment in her case. She was therefore placed on the waiting list for a new liver, and received a transplant after nine months. This could have been the end of a bad dream for Liz Schick and her family – she recalls how her young daughter regularly asked if she, her mother, was going to die during that period, an ordeal that she would hastily put behind her, never to revisit that difficult time of her life. But instead, Liz Schick chose to embrace her experience. She transformed her brush with death with a life-transforming adventure, not only for her and her family, but for other transplantees and donor families.
It all begins with Liz Schick’s wilful and generous nature. Far from being deterred by one of life’s unhappy twists, she turned the situation round thanks to her mother’s motto “always turn a minus into a plus”. For Schick, liver transplantation clearly falls in that category of event – something that can only amaze her interlocutors, for the “minuses” of life usually take the form of much more trivial and petty events. Even more surprising, when asked when the idea of launching a charity that would deal with the issue of transplantation arose in her mind after the operation, she immediately points out that it actually started to gain ground even before her own transplant: not the one to wait passively for a new liver, she sought to understand her condition and what transplantation would mean for her at the time of the operation and after. She met with Professor Morel, doctor-in-chief of the surgery department at the HUG (Hôpitaux Universitaires de Genève) and specialist of liver, kidney and pancreas transplantation procedures, who enrolled her as a spokeswoman to exemplify the case of a healthy individual getting sick apparently overnight and needing an urgent organ transplant. Far from shying away for this task at a time when her life was actually in the balance, she went for it, trying to raise awareness on a medical issue on which Switzerland is still lagging behind most of its European neighbours.
New leases, new vision
The day of Liz Schick’s transplant finally came, and with it, the beginning of a new, better life as she calls it herself. “Life is better now because when you get a transplant, you really get what is called the gift of life. You are effectively living thanks to someone else’s decision to pass on that gift to you. It makes everything more precious.” And it really did not stop her from doing anything, even climbing Mount Kilimanjaro three years after her transplant. “At 5895 metres, I finally made peace with my body,” she smiles. Approached by Swisstransplant to join the Winter World Transplant Games, she immediately assessed the necessity and opportunity to focus on transplanted kids. A necessity because of the peculiar hardship children, youngsters and their families have to go through when confronted with the ordeal of needing an organ or tissue transplant – and the life or death sentence that goes with it – and an opportunity to display the evident feature that “children
are the best ambassadors of life. They are the future,” as Schick puts it. “It was so obvious to me that we needed to do something that would revolve around them,” she adds, so when the WTGF (World Transplant Games Federation of which she is now on the Council) asked her to launch a standalone event that would further the cause of organ donation, she knew just what to do, and it took the form of Tackers.
Launched in 2002, Tackers (Transplant Adventure Camps for Kids) organises camps for kids that have undergone an organ transplant, providing them with “an adventure of a lifetime and an experience they will remember for ever,” Liz Schick explains. And it is not hard to see why: gathering transplanted children from all over the world, Tackers camps are often for most of them the first opportunity they get at meeting kids that had to undergo the same kind of procedure in a non-medical environment. This feature is of utmost importance, as she explains, transplanted kids seldom have the chance to feel they are no different from their counterparts. Having been transplanted makes them stand apart, a feeling that most kids absolutely loathe. And the daily regimen of drugs they have to follow – recently transplanted kids often have to take in as much as ten different medications a day, a difficult sine qua non condition for remaining healthy that is notoriously hard to ingrain in youngsters – does nothing to dissipate this sensation of being abnormal, and, above all, still in danger. “Seeing other kids comply with their daily drug intake is very encouraging for children,” underlines Liz, whose camps rely on the assistance of trained nurses who ensure that the kids are medically taken in charge. Tackers is not all hard knocks. The fun side of things, sports, is also a decisive factor in providing the youngsters at the camp with the confidence they often lack either because of the trauma of their previous medical conditions – physical weakness is an obvious symptom in individuals needing a transplant – but also often because their families tend to overprotect them, pushing their feeling of inability on the way up. Tackers, on the contrary, is a no non-sense camp: kids here ski, dive, dog-sledge, paraglide, and enjoy James Bond-like fun that even some of the kids that have not undergone a transplant might have taken part in. “They leave the camp full of confidence, having proved to themselves and to their friends and families that life after a transplant does not have to be different.”
Facts and feelings
At the very least, and as Liz Schick relentlessly puts is, it does not have to be worse. Now in its tenth year, Tackers has welcomed hundreds of kids from all around the world in Anzères, Valais, where the camps are held each year. 2012 also saw Tackers take part in the Winter World Transplant Games, running the Nicholas Cup, a camp and ski race named after Nicholas Green, a 7-year American boy who was killed in a botched attempted robbery while his family was vacationing in Italy 16 years ago. At the hospital, Nicholas’ parents’ first decision was to donate the organs of their son.
The Nicholas Cup was actually started by Liz Schick in 2001. “Tackers is as much about the kids that have been transplanted as about the donor families. Having these kids enjoying themselves and enjoying their lives after being so sick is our way to honour the donor families, and thank them for the amazing gift they were kind enough to extend to us”.
For organ transplantation is a very complex issue, not least because receiving an organ involves, bluntly put, waiting for someone to die. Watching the short movie about Tackers, it is amazing to see how very vivid this issue is in the mind of the kids, no matter how young they are. In heart-wrenching words, they all have thoughts for their donor and their family, and the topic is clearly disturbing for them. Liz Schick insists on the importance of sending a thank you message from time to time to the donor families, and she sees Tackers as an ideal vehicle to do so. “Being a donor is a very complex issue,” she says softly when asked about the relatively low rates of organ donation in Switzerland, “I do not believe in making people feel guilt if they do not want to give their organs or those of their relatives, I believe in showing the results of this act and our thanks”.
As Reg Green, the father of Nicholas Green, explains, “most of the time people have no idea of their deceased relatives’ position towards organ donation, so they’d rather do nothing. This is why it is so important to let everybody know that you are an organ donor if so is your wish. For you are not just fixing a sickly body with organ or tissue donation: you give a new one, and thus a new life.”
Public attitude towards organ donation is very contradictory: if polls regularly show the wide acceptance towards that medical procedure, at the individual level it is an issue rarely spoken about, perhaps because organ donation pinpoints like no other human endeavour attitude towards death – our own and that of our loved ones – and the very little progress society has made in accepting and acknowledging it. It is all the more ironic that organ donation truly offers a way to overcome it. Liz Schick does point out that presumed consent could for now be the best way to go about to bypass these issues, but she knows this a battle that rarely appears on the national public health agenda. For now, she is focusing on fighting her own battle one day at a time, raising awareness and funds for the cause, hopefully replicating Tackers in other countries one day. On the 20th June, she will start a fundraising bike ride organised by Sean Verity with Martin Loat and Leslie Gray that will take them all the way to the South of France. She is also already focusing on the next Tackers camp, that will take place for a week in Anzères in March 2013. Maybe she will not singlehandedly win the battle of changing people’s attitude towards organ donation, but with her life and head constantly bubbling with new projects and ideas, she certainly has thanked her donor a million times over.
To help Liz Schick and Tackers raise awareness on organ donation, check www.tackers.org/how-to-donate. Next Tackers camp will be held from 16–23 March, 2013 in Anzères, registration already open at www.tackers.org.
Waiting for organs
The number of organ donors has been stable in Switzerland since 2009. In 2011, it was 102, that is about 13 donors per million inhabitants. These figures put Switzerland clearly behind its neighbours France, Italy and Austria in terms of organ-donating numbers. In contrast, though, Switzerland is particularly active in comparison with its European neighbours when it comes to living donation, at 14 donors per million inhabitants. In 2010 and 2011, a total of 504 patients received transplants. The waiting lists are not as long as in the years 2007 to 2009. Nevertheless, at 1074 patients registered on 1 January, 2012 (a plus of 4%), that waiting list is as long as it ever was.
Source: Swisstransplant, Swiss National Foundation for organ donation and transplantation, www.swisstransplant.org
Article by Lauriane Zonco