Thursday, January 9, 2020

We had the privilege of meeting Elise Nordin to talk about research and organ donation. Read our interview with Elise below, and please share it to raise awareness about organ donation! In the photo, Elise is wearing RECYCLE ME’s T-shirt for organ donation awareness. Thank you, Elise, for participating and sharing your thoughts. Organ donation concerns us all. Your choice matters – together we can save lives!

- Who are you and where do you live? Would you like to say something about your background and family, and your friends?
My name is Elise Nordin. I come from Luleå originally but currently I'm living in Gothenburg. I have studied several things and one of them is nursing. I worked for several years as a nurse. The work experiences I’ve gained have shown me how organ donation has the potential to save lives and reduce suffering for people and their loved ones.

- What inspires you as a person and in your profession as a researcher?
People who inspire me are those with a positive and passionate attitude. That gives me the feeling that everything is possible. Being able to develop and explore a field also inspires me since it always turns out there is more to learn, as well as building on the knowledge acquired and continuing to explore.

- Can you tell us something about your research study?
I’m doing a PhD at Chalmers University of Technology at the Department of Biology and Biotechnology where I want to try to develop more personalized nutritional advice with the help of molecular methods. I have conducted a human intervention trial with people with Irritable Bowel Syndrome (IBS). With the help of biological samples, we are investigating the possibility to get objective markers of the health response to food intake and to be able to predefine a health response.

- What motivates you as a person and as a researcher?
I find motivation in contributing something meaningful, doing something that has the potential to benefit people. What also motivates me is working with motivated and inspiring people. Being in a good atmosphere is one of the most motivating factors for me.

- Why have you chosen to take part in the RECYCLE ME movement for organ donation?
When I got to hear about RECYCLE ME I felt it was a really good initiative. Awareness about organ donation must increase. Better general knowledge is necessary to help people to make a decision which could save lives. There is a lot of work to do in this area and RECYCLE ME is making a great contribution to awareness and research.

Tuesday, April 2, 2019

We recently had the privilege of meeting Sofia Larsson and talking about organ donation. Sofia received a new liver about a half year ago, and she agreed to share with us what it was like for her to go through the organ transplantation process and the many thoughts and feelings it awoke in her.  Thank you, Sofia, for sharing your story! We hope that we will soon be able to tell you more about Sofia’s and Recycle me’s new plans! Remember to make your wishes known, as others have already done, so that we can save lives together!

- Could you please tell us who you are, and something about your background?

- I grew up and lived in a little village near Trollhättan until I was nineteen, with my mum and dad and two siblings. We’re all very close in my family, so even though the period of my illness was tough for us all, my family has been a tremendous support and a secure haven for me that I couldn’t have managed without.  My illness was discovered in 2009, when I was 14, and in the beginning nobody knew what it was and I had to undergo various examinations. It turned out that I probably had autoimmune hepatitis and primary schlerosing cholangitis, which is like an inflammation in the liver that can lead to cirrhosis of the liver. Even today, doctors are uncertain whether I had both diagnoses but that’s what they believe anyway. These two illnesses are closely related and sometimes it’s hard to draw a sharp line between them, but I probably had a mixture of the two. The doctors decided that heavy doses of cortisone and a liver transplantation within the next few years were the best solution.

- When I was 19, I moved to Gothenburg to study human resources management and have now got my qualification. During my time as a student I met the man I’m now living with who has naturally also given me enormous support and security without which I couldn’t have coped. Obviously, it’s been a tough time for him too, but now that we’ve got through depression, transplantation, anxiety attacks and a long wait together, we’re stronger together than ever, which is a bit of a cliché. We’ve really had to experience the other’s true self, and to accept that things are not always that easy.

- Could you please tell us what you had to go through? Your thoughts before transplantation and now afterwards? What transplantation has meant for you and your family?

- The treatment I was given helped me to survive without transplantation for many more years than the doctors had believed possible in the beginning. Transplantation was always part of the future and you never arrive at the future, so it was a shock when the doctors thought it was time to start the transplantation preparation procedure to put me on the waiting list. The transplantation preparation procedure started in the summer of 2017 and carried on for about 5 months since there wasn’t any great panic to get me onto the waiting list. About a month before I was put on the waiting list, after a hectic week at work, I suddenly lost all my energy. During the weekend, I had no strength for anything and I had to report sick on Monday. My idea was that I’d be back at work  on Tuesday or Wednesday the same week when I’d recharged my batteries.  But it is only now, about one and a half years later and after my transplantation that I can even consider returning to work. It was probably fatigue with physical exhaustion on account of the illness but also mental exhaustion because of all that was going on. It led to a depression and panic anxiety attacks that were something extra that I had to deal with over and above the waiting.

- The period spent on the waiting list was tough in many ways, since I was obviously waiting for that phone call and wanted it to come as soon as possible since I was getting worse and worse. During the last period before the operation, I had no strength to go out and was also prevented by the anxiety attacks. At the same time I was also afraid to get a phone call, since I didn’t feel ready for the operation. Some days I really wanted the call to come, but at the same time I couldn’t hope for that, since a phone call would mean that somebody had passed away and that there were now relatives left behind and grieving. Therefore my feelings were extra split between wanting and not wanting the call, since I couldn’t wish for somebody to die. I also felt disgusted about having someone else’s organ inside me, which made me almost wish they would take my name off the list. However, my love for those close to me was so strong that I didn’t want to hurt them by cutting my life so much shorter as would have been the case if I’d chosen not to have a transplantation. I would rather feel bad myself than have them feel bad. Now, when I’ve had my transplantation, I don’t feel any disgust at all, having seen photos of what my sick liver looked like and that being one of the worst things I’ve ever seen. So even if the liver I have now has belonged to someone else, it is in any case healthy and in good working condition.

- That phone call from the transplantation coordinators came twice for me to be a reserve, which meant that I would get the liver if the person before me in the queue couldn’t take it for some reason. Then one had to be ready within a minute or so either to go back home or to get ready for operation. It took weeks for me to recover mentally from all the extra stress. However, the third time it was my turn, the liver was mine. This was slightly more than one year after I’d been put on the waiting list. They can’t guarantee that there’ll be an operation before one is actually lying on the operating table, however, in case something doesn’t look right. But everything looked OK and the liver was perfectly compatible with me. Afterwards they said that the operation couldn’t have gone better, and that even though they had problems during the operation, they solved them in the best possible way. Even after the operation, my blood values have continued to improve steadily. My pulse is still a bit high and I’m still very tired, but after only a week I felt better and was more energetic than I’d been for many years. What a wonderful feeling! My family and closest friends have also been able to relax and don’t need to be so worried about me any longer.  I can’t imagine how tough it’s been for them, and I think it’s almost tougher to be a bystander than to go through it oneself.

- If you want to and know who the donor was or is, what are your thoughts on that?

- I don’t know much about the donor, only that the donor was taller and broader than I am, as one surgeon told me after the transplantation. Since I’m quite tall for a girl, I think the donor must have been a man. But that’s only a guess, the only thing I know about is size, what the donor died of and that the donor was young. I don’t really like speculating any more than this, but it’s necessary for me to have some kind of picture of the donor to be able to grieve and be grateful to the donor and his family, but I don’t want to have too clear a picture because then it would all be too real and that would be harder for me to handle. I feel guilt, mainly towards the donor’s family, that I’m alive and enjoying having my life back while they are grieving for somebody they love.

- There’s so much that people don’t know about organ donation, for example why one may need a new organ, how was that in your case? How do you see the future, any plans? If you think it important, why do you think it important to know about organ donation?

- I want to focus on the importance of making a decision about donating one’s organs if the question should arise. To have made a decision makes things so much easier for the families and relatives at a very difficult time. Donating one’s organs can save many lives. If one is willing to receive organs if one needs, then I think one should also be willing to donate organs. As someone who has been on a waiting list and been transplanted, I also want to spread information about organ transplantation so that people can understand that one not only feels enormous gratitude but that there are many other feelings involved too, and that it is actually a complicated operation. Also, many people feel that they lose part of their identity when they get well, which doesn’t necessarily mean they are less thankful but just that it is a complex situation with lots of different emotions.

- When I was 23 all I had energy for was to sleep 18 hours a days and lie around on the sofa the rest of the time, no life to speak of, so of course I’m incredibly thankful to have got my life back even though it has been a very tough time as well.

Thank you, Sofia, for sharing your story! Remember to make your wishes known, we can save lives together!

Sunday, December 16, 2018

Dear all, we have been quiet for some time now but now we are back! We have the pleasure of collaborating with the multi-talented and very creative artist, researcher and musician Tarynne Swarts from South Africa! Tarynne is wearing our Brave Heart jewellery in her new music video. By doing so she is helping to awaken awareness about organ donation through art and music worldwide! Please watch her video and read our interview with her! And do remember, organ donation only works if we unite and take an active stand for making our wishes known. Organ donation includes us all.

- Tell us about who you are? I am World musician Tarynne Swarts (Pachamama) singer songwriter, producer from South Africa. The music I write is a fusion between Latin and World rhythms with a distinct African voice. I recorded my debut album Pachamama (earth mother) in Granada Spain. Music is my passion and I see myself as a bridge between different cultures through music.

- Your background? I started playing piano at age 10. I basically grew up in church which sparked my musical interest. I come from a very musical background. My late father John Swarts was a musician and my biggest inspiration. I received my bachelor degree in classical piano, my masters in education at the University of Leuven in Belgium and now I am finishing my PhD on sociology at the University of Granada in Spain. I am studying international mobility of Erasmus mundus students.

- Tell us about the Imibala festival?
I am the CEO and founder of the Imibala Arts festival (Cross colours /cross cultures) an Arts initiative with the objective of youth development through the Arts. It was established in 2017 and this year we successfully hosted our second annual Imibala festival. Our aim is to develop and give a platform to emerging artists from previously disadvantaged areas in Port Elizabeth.

- What is the meaning of the track Mbaqanga?
The Mbaqanga track is a throwback to the 1970's genre of Mbaqanga and kwela music in South Africa. I like to call it my people of the South track as I wrote it in Sicily, recorded it in Granada Spain and shot the music video in South Africa. The music video pays hommage to Nelson Mandela and the ideals of unity, Ubuntu and togetherness he stood for and was shot in Nelson Mandela Bay. This song also celebrates the diversity of our rainbow nation post Apartheid and bringing people of the World together through music.

- Why did you choose to take a stand for organ donation?
The recycle me campaign is a nobel cause raising awareness about organ donation. Due to a lack of human organs today many people have lost their lives and loved ones. Organ donation can give someone a second lease on life and is a nobel and selfless act. I admire the work recycle me has done not only in awareness but also the research the research on transplants recycle me is supporting.

Thank you Tarynne for collaborating with Recycle Me for organ donation awareness! We hope for further collaborations with artists, researchers, musicians and many more!  

More about Tarynne Swarts;

Sunday, September 23, 2018

This is Claudia, she is a biologist and worked as a university teacher in Brazil. She currently lives in Sweden, here she is wearing a RECYCLE ME Liver T-shirt for organ donation awareness to encourage us all to talk about organ donation to each other. To quote Claudia.

“- Donating organs is an act of love for others! Sometimes you want to give away and your family does not find it interesting, it is important to talk about the desire to help save lives when you are no longer here. Six years ago, my dear aunt died waiting for a liver or part of an organ. The waiting line is too long and she was getting increasingly sick and could not resist .. She was an organ donor, but unfortunately she couldn´t donate her corneas, nor any other part because she was very sick, but she wanted very much. Talking about organ donation is important to make the subject normal and to make more and more people wanting to help save other lives.” - Claudia Santos Klostermann

Thank you, Claudia, for sharing your thoughtful words and promoting this important stand! Keep spreading the message. – Organ Donation includes all of us! Your wishes matter!

Friday, August 17, 2018

Tonight's performance (17-August-2018) cancelled on account of illness.

Friday, August 10, 2018

Our South African ambassador Msaki will be at the Gothenburg Culture Festival in Sweden She will perform on stage on Friday 17th of August 19:30-20:15

Msaki - singer-songwriter from East London (ZAF)

“Msaki is a composer and singer-songwriter from East London, South Africa. She was born into a musically gifted family with a father, who was a DJ while studying at the University of Fort Hare, and also ran choirs throughout his life. He was one of Msaki’s first influences. Her grandfather was also a well-known composer and songwriter therefore it comes as no surprise that at a young age Msaki knew that there was magic in music.

2012 was the year the singer-songwriter was selected from over 900 applicants from all over the world to go study in North Carolina USA with 30 other artists, musicians and writers. The time she spent focused on creativity, spirituality and falling in love with music, which is what propelled Msaki into being a full-time independent performing artist. When she returned to South Africa her music career began and she signed herself to her own Indie Label, One Shushu Day Artistry.

Msaki creates a sound that combines soulful folk with symphonic movements, Xhosa lyrics and African poly-rhythms with portals of sincere improvisations. Her raw delivery disrupts your senses, leaving you moved and quietly longing for more as she weaves subtle tales of love, loss, home, revolution and hope. She plays with an ever-evolving and expanding band of incredible musicians from different musical backgrounds, which she calls the Golden Circle.” 

- Text from Göteborgs Kulturkalas / Gothenburg Culture Festival;

Foto: Mambila Mageza.

Tuesday, July 31, 2018

Msaki will be on stage in Sweden at the Gothenburg Culture Festival on Friday 17th of August at 19.30-20.30. Location Bältespännarparken - Cirkustältet
Free entrance! Welcome! Photo Robin Fassier

Msaki Facebook
Msaki Twitter
Msaki Yutube

Friday, July 20, 2018

Our South African ambassador Msaki is on tour in Europe. She will be on stage in Sweden at the Gothenburg Culture Festival on Friday 17th of August at 7.30-20.15. Location Bältespännarparken - Cirkustältet

Msaki Facebook
Msaki Twitter
Msaki Yutube

Wednesday, July 18, 2018

We had the privilege to get an interview about André Lassooij, his life was saved by an unknown lung donor!  Read about his remarkable life from being diagnosed with a progressive and irreversible lung disease causing him to need a lung transplant to survive.

“André Lassooij was in his early 30’s when pulmonary fibrosis (IPF) was diagnosed. Before he was ill, he practiced in various sports, including table tennis, squash, cycling and running. The next four years after he was diagnosed, the disease changed him. The duration of his power was rapidly deteriorating and it was almost impossible for him to move without oxygen. A stair elevator was needed, André had to stop work and visited the hospital often. But he still went with oxygen to the sport school and swimming (with a tube of 12m and the bottle on the site of the pool!) until even that wasn’t possible anymore in spite of full oxygen.

In year of 1996, Andrés life was changed completely by the lifesaving "Gift of life" of an unknown lung donor. After the transplant, his health improved immediately and after four months he was able to his work on the bike again! One year after transplantation, he participated in the World Transplant Games (WTG) in Sydney, Australia. André was then able to participate in all of the following WTG and developed in athletics, winning many medals. The WTG Gold Coast, Australia in 2009 was his most successful with world records in the 100m and 200m sprints and gold in high and long jump. André is most proud of his sporting performance in 2008, when he became Dutch champion at the 200m sprint M50, whose opponents in the final did not know or barely knew of his double lung transplantation.

In 2014, André, as initiator of Expedition Kilimanjaro, managed to climb with 8 other organ transplant recipients, under the responsibility of the UMCG, the Kilimanjaro with the summit at 5895m. In addition to his athletic achievements, André has dealt with a number of administrative functions. As Vice-President of the European Heart Lung Transplant Federation, Chairman of the Organizing Committee for the European Heart and Lung Transplant Games in Apeldoorn 2012, Chairman of the Dutch Sport and Transplantation Foundation and in 2013 elected Trustee, and since 2015, Chairman of the Sports Committee of the World Transplant Games Federation. For his inspiring sports performance and administrative functions after his double lung transplant, in 2016 André Lassooij received the European Lung Foundation Award (ELF). Earlier, the ELF Award was awarded to the World Health Organization (2014), FC Barcelona (2013) and Mr Bloomberg, New York (2008).

In 2016, with the project “Life for Kids”, André promoted physical activity for children before and after transplant by giving presentations in 15 transplant centers for children on his cycling route of 3610 km over Amsterdam, Brussels, London, Paris, Madrid and Malaga. To meet, speak and inspire the children, parents and doctors about physical activity solutions in and outside the hospital. Andre said "Giving them a feeling there is a healthy future possible after the transplant was a wonderful experience”.

André 's positive attitude, his athletic achievements and his commitment to promoting organ donation is inspiring. And makes the "RECYCLE ME” movement more than true!”

Keep up the good work André! You are truly a man of many talents, warm hearted, full of life an inspiration to all of us!

Remember organ donation only works if we unite together, yours and others lives can be saved if we all sign up as organ donors. In the photo André is wearing a RECYCLE ME T-shirt to promote Organ Donation Awareness.

Links to organisations etc., mentioned in text:
The European Lung Foundation Award (ELF)
Life for Kids  

Friday, July 13, 2018

A golden heart on a golden woman! "A picture is worth a thousand words" the old saying goes and we agree! 

We got this beautiful photo of one of our loyal supporters Ellinor Johansson! With this photo beaming of hope and kindness we like to encourage you to share your thoughts, wishes on organ donation. Organ donation is not to be taken for granted, it only works if we all unite and help each other.

Ellinor got to know RECYCLE ME some years ago and have been involved with us to promote organ donation awareness ever since. Ellinor is art project manager within the culture sphere and has written books, for example "Mojaner - naturens magiska städare" / “The Moyans- magical cleaners of nature!”

” I became interested in organ donation after seeing a program on TV about axolotl salamanders, that are self-regenerating. They can also transfer cells to each other for healing purposes when necessary. Research on these salamanders is making great progress with its contributions to knowledge about organ donation. I find it very interesting to see how human beings, nature and animals can work together, turning up possibilities for new ideas and innovations by taking note of small things in nature, its threads and its networks."  - Ellinor Johansson