Waiting in Line
The Issue of Organ Donation in Sweden and How to Tackle it
Story by Oskar Swartling / Photos by Martin Kjellberg and Helena Wahlman
“It is very hard to describe the waiting”, Martha Ehlin says. “It is so incredibly difficult to be on the waiting list. I usually describe it as a living nightmare. There is so much uncertainty. Someone else’s decision will decide whether I can stay alive or not.” Martha was thirty years old when the unexplained back pain and exhaustion did not give away. The symptoms became more severe and after visiting a doctor she did an x-ray. The radiological examination revealed round, cyst-like formations in and on the liver, but no further explanation. Martha had to endure even more testing and examinations before she got the answer to her problems. The answer, however, was a bolt from the blue. She had cancer, a rare endocrine tumour in her pancreas with metastases in the liver. The cancer was neither possible to remove by surgery nor curable. Martha faced two options: lifelong cytostatic treatment or five-organ transplantation. The five-organ transplantation included a new pancreas, liver and, due to surgical reasons, also a new ventricle, duodenum and small intestines. Martha chose the latter and was put on the waiting list. And she waited.
“I have never seen myself as sick. I have never done that and I never will. I have a new kidney, but I am not sick.”
Peter Carstedt was twenty-one years old and had studied economy for two years when he decided to study in Japan the following year. He was in the middle of his studies and wanted a change of environment, common for people of his age. He applied and got accepted, but needed a medical certificate before he could leave. “Wait a second, this doesn’t seem right”, he says, recalling what the doctors told him. He had proteinuria and high blood pressure and was sent to the hospital for a kidney biopsy, where the worry was confirmed. Peter had IgA-nephropathy, a disease associated with an abnormal production of IgA and depositions of the antibodies in the glomeruli, but the cause is not totally clear. Peter stayed positive, despite the diagnosis: “I thought: ‘how lucky I was to find it’, rather than focusing on the negative aspects”. At the time of the diagnosis Peter had a renal function at 70 % and was given medicine with regular controls. The course of the disease varies; some have a rapidly progressive nephropathy, others stay at their decreased renal function for decades. “The doctors told me that if I was lucky [the renal function] would stay steady and I could live until I was fifty or sixty.” After the unexpected news, Peter went to Japan.
Martha faced two options: lifelong cytostatic treatment or five-organ transplantation.
Martha tried to live in the present, although it was hard not to keep the cell phone close at all times, waiting for that phone call that would change everything. At the same time, she was treated with chemotherapy that broke her down everyday. Paradoxically, she could not become sicker since the surgery was complex and only could be done on fairly healthy persons, this despite the treatment and the fact that she had a growing and spreading cancer. “But I tried to stay positive and take one day at a time. I made goals for myself in the future. One of these was to help others that was in the same situation as I was.” The surgery itself was a subject for worrying: “I was given strong medication and had trouble sleeping. I could feel how I was being broken down, since everyday I got worse and worse. I also thought a lot on the possible transplantation. It was a big operation. Would I wake up again? And if I would, would everything work or was I going to continue with this suffering?” Martha also thought about her living donor. That someone else would be willing to donate his or her organs felt unreal. During that time, she had not herself registered as an organ donator. She was going to receive an organ but had not expressed her will to donate herself. Martha felt ashamed, it was wrong. What she didn’t know was the situation of organ donation in Sweden, still today: “I understood that persons had to wait for a while on a waiting list, but that we in Sweden had such an organ shortage I understood first when I started to work with the question. Maybe I was ‘happily’ unknowing during my wait.”
“…that we in Sweden had such an organ shortage I understood first when I started to work with the question.”
After his diagnosis, Peter kept going. He was, as he describes it, “living life”. He went to Japan to study abroad, travelled to Haiti and worked with HIV and Aids issues and ended up in Shanghai where he worked as a consultant. “I have never seen myself as sick”, Peter says, “I have never done that and I never will. I am transplanted, but not sick.” In his late twenties and living in Shanghai, Peter’s renal function plummeted to 30 %. He developed gout that was mistakenly considered an injury he acquired after skiing. Only later, when the gout spread to both his feet, did Peter become aware of his decreased renal function. “The doctors in Sweden wanted me to come home, but I wanted to go home with flying colours, so I took the Trans-Siberian railway home. I couldn’t just go home because of a disease I didn’t even have”, he says and laughs. “The trip took a week and when I came home I had a renal function at 9 % I was so tired; it felt like having influenza for three months. The disease went the wrong way.”
“Are you kidding with me?” was the only thing Martha could say when the call finally came, informing her that the hospital had organs ready for her. She underwent the surgery the same evening and was given a new liver, pancreas, ventricle, duodenum and small intestines. The operation took seventeen hours. But the wait for new organs and the chemotherapy before were not the only challenges Martha faced. “The way back was not a dance on roses. There were a number of complications and I was at the intensive care unit for four months. I had to learn everything again. Walk, eat, and tie my shoes. And I was kept at the hospital another four months before I could leave.” During this time, she heard that there was something called the World Transplant Games, a sporting event for transplant athletes. The next event was in two years and was going to be held in Gothenburg. Martha was happy if she could just be in the audience and applaud at the other transplant recipients. It turns out, she went on to achieve something much more than that. During the World Transplant Games she won five gold medals in five different disciplines, or as she once said: one gold for every organ she had received. During the games, one of her teammates was Peter Carstedt.
“Are you kidding with me?”
“One thing I clearly remember is when the senior physician came in and told me that I needed acute dialysis. That wasn’t so fun, it was one of the few times I cried”, Peter says. However, he soon regained some of his renal function, which is very rare. But during this time, he had already begun with the transplantation investigation. A lot of persons close to Peter offered to donate a kidney. “That was also a strange situation. What do you do when an ex-girlfriend or a friend from school offers to donate? Do you say: ‘Good, I’ll tell the doctor, just give me your number and he will call you’?” In the end, Peter’s mother was the best match for a donation. Due to his partly regained kidney function, the investigation for transplantation was already finished before he actually needed the organ. He describes this as a very odd situation: “I was waiting to become more sick so I could become healthy. At least that’s how I saw it. I kind of wanted to be done with it.” It is indeed a difficult situation and Peter raises some important questions: “How do you do if you are applying for a job? Do you tell them? Or if you are on a date, do you tell it on the first, the second or the third date?” Peter’s renal function became progressively worse and he eventually received his mother’s kidney. The procedure went well and Peter, like Martha, participated in the World Transplant Games 2011 in Gothenburg. Also he won five gold medals.
The World Transplant Games were an epiphany for Peter: “You celebrated life, it was a game with only winners. When we had the opening ceremony there was a silent minute. A silent minute honouring all the persons that have died on a waiting list and we were honouring all the donors that made it possible for us to be alive. Today, this still touches me.” He started to think about the situation for people needing transplantation in Sweden. Just like Martha, whose goal was to help others who are in the situation she was in before the operation. At the time, there wasn’t any independent organisation working with the question of transplantation and Sweden had few organs transplanted each year compared to other countries in the European Union. No one in Sweden was working for the people on the waiting list. Martha and Peter, two people with different histories; one with an aggressive disease and recipient from a deceased donor; the other with a progressively decreased renal function and recipient from a living donor, united with the ambition take on the issues and created the organisation Mer Organdonation (More organ donation, MOD). In the beginning, Peter and Martha travelled around Sweden, talking to Socialstyrelsen (National Board of Health and Welfare), the Donation Council, Transplantation units and schools. They wanted to learn more about the issue of transplantation in Sweden and teaching about it, debunking myths. In their eyes, the big issue was that no one talked about it, the debate was non-existing.
“I usually describe it as a living nightmare. There is so much uncertainty. Someone else’s decision will decide whether I can stay alive or not.”
Martha and Peter identified three main problems in Sweden. The first one is the public. Sweden ranks among the best in the attitude towards organ donation, where 85 % of the population is positive towards donating their organs. However, only 15 % have sign up to the national donation register and 40 % have expressed their will in some way, e.g talked to relatives or carrying a donation card. The second issue is the law. The transplantation legislation is old and vague, making the legal aspects of transplantation problematic. The third issue are the intensive care units and their praxis and routines. With better and better medicine and equipment we can keep people alive for a longer period of time, making more people eligible for donation. But one cannot, in today’s praxis, treat someone for another person’s benefit. Here is where it gets problematic. Unfortunately transplantation falls into this category, making it hard for the staff at the intensive care unit to know the extent of their authority. To put it simply, the law, praxis and routines are not up to date. The old and poorly updated law has widespread impacts: the number of transplantations per million persons varies between different regions in Sweden, meaning that different regions interpret the law in dissimilar ways. Additionally, many comparable countries, like Norway and Spain surpass Sweden in the amount of transplantations per million persons. Peter is quick to add that the transplantation side is very good in Sweden. Many sophisticated surgeries are done, like the five-organ transplantation Martha got, and the mortality after transplantation is low. It is on the donating side that MOD is trying to make a change, through lectures in schools and activity on social media, pamphlets and smart phone apps. The list goes on and on, but the ambition is to raise the public’s awareness. They want people to pick a side and then make their will heard, thus helping all the people on the long waiting list. Every year about fifty persons die while on the waiting list in Sweden and MOD is trying to push that down to zero.
“In 20 years, I hope MOD doesn’t have to exist.”
Paradoxically, a long waiting list is better than a short one, given the turnover is higher. This allows the match between donor and recipient to be better. MOD’s goal is therefore not to shrink the waiting list, but to make it possible for more people to have a proper match in time. And since the only way to do this is to increase the number of people who have expressed their will, MOD is evidently on the right path. Two years after the organisation was founded by Martha and Peter, 64.000 listed themselves in the donation register, twice the number the years before. Three years after, more people signed up during the first six months than in 2011 and 2012 combined. In 2014 a movie made by MOD had one million views in just a month. Thanks to Peter, Martha and all the employees and volunteers, the issue of organ donation has been raised. However, the issue is complex. The public’s attention is not the only thing needed to decrease the mortality on the waiting list; the politicians and the health care also has to do what they can to change the situation to the better. Socialstyrelsen published a report stating that the number of donors every year could be almost doubled, if only the health care had worked with the issue of transplantation and been better at taking the very difficult discussion that follows a death of a person eligible for donation. According to Peter, the response from the health care has been mainly good: “We got a fantastic welcoming at the meeting for all persons responsible for transplantation in Sweden, where we got a standing ovation. Then sometimes I have met persons pointing out that we are not physicians, that this is not our expertise. But since nothing is being done, we do it.” Martha agrees that it is a question that always has to be present. “The issue of transplantation has to be taken further. Among the public, the health care and the politicians that make the decisions. It is about knowledge and attitudes. And I want to think that we are on the right tracks.”
“What we know is that there are going to be changes in Sweden.”, Peter says. MOD has taken part of a national investigation led by Socialstyrelsen, proposing law changes and new routines in the health care that will make the transplantation situation better in Sweden. This is desperately needed in a country with the highest incidence of people positive to donate their organs, but with few transplantations per year. People waiting for new organs should not have to die when we have the potential to help them. It is essential that everyone ask themselves where they stand on the question, for there are many reasons one may not want to donate their organs. Once the stand is taken, make it heard. Even though everyone by law has agreed to donate their organs if not stated otherwise, this is not followed by the health care. If you want to be sure your organs can help someone in need, join the donation register or express your will to your family. But we, as part of the future health care, have a bigger responsibility. It is time to change how the transplantation system works in the health care, because there is an enormous discrepancy between the number of potential donators and the actual donators, therefore saving people that are today dying in vain. It is just not acceptable that errors of the donation systems allow people to die prematurely, and the health care system has to take its responsibility in this complex issue. Maybe then can we help Peter pursue his vision: “In 20 years, I hope MOD doesn’t have to exist.”
MER ORGANDONATION (MORE ORGAN DONATION) is an independent organization working with the issue of transplantation in Sweden. They work for the people on the waiting list where no one should die waiting for a transplantation.