In honor of National Donor Day, I had the opportunity to interview a Health Activist who started an amazing health community dedicated to the conversation of organ transplant. Nelson Freytes created Transplant Cafe to offer a place for people who are in the unique position and to “Increasing transplant awareness through personal profiles, interactive tools, friendships, blogs, discussions, groups, events & networking!” Having benefited from a transplant himself, Nelson was brought into the world of Health Activism via his love of technology. Now, nearly 3,000 members enjoy the community of Transplant Cafe. Something unique I really loved about the community was on the Just 4 Fun page: a really cool game called Pill Design Game where members create little portraits out of their pills. I encourage you to learn more about organ donation and consider educating your community members about this extremely important yet under-discussed health world of organ donation.
Amanda: Can you tell us a little bit about your background and why you became an advocate for the transplant community? What made you get involved in the first place?
Nelson: Sure, I grew up having hyperthyroidism in a dormant or semi active state that would cause mild health issues for me at at various stages of my childhood. All events were very far apart and quickly remedied so the condition was never thought about much. At the age of 24 this all changed and my thyroid began to really act up. After consulting with my private physician I began taking a pill to control my hyperthyroidism. After a couple of months of taking this pill I had to have an emergency liver transplant due to fulminate liver failure because of and adverse allergic reaction to it.
As you can imagine, going into the ER for something one would consider a minor issue and then becoming comatose and waking up 5 days later with a new liver in you is somewhat of a game changer. This was a huge paradigm shift for me and my family and immense confirmation of a higher power and the amazing ability of science to help people!
I believe that having always been a very healthy and active person until this brief parenthesis in my life and up to that point not being very familiar at all with the world or concept of transplantation – my transplant experience was somewhat different than the average recipient.
Unfortunately, due to what I have found to be lack of education about organ donation, in most cases transplant recipients have to wait for years before they receive a transplant. Of course it doesn’t take a sudden transplant to realize this. Those waiting for a transplant and the families of those lost every day due to the lack of organs available for transplants know this better than anyone. As of today there are 110K people waiting for a transplant in the U.S. alone. (Ref: http://unos.org.)
Not knowing much or sadly anything at all really about transplantation before having a transplant likely contributed for me taking longer than ideal to become an advocate for the transplant community. But once the actual realization set in that I was indeed very, very fortunate to have received a very rare and almost immediate transplant and how unheard of this can be in our community, things started to take on a new meaning. It was at that point that I started to have a desire and sense of duty to become an advocate for organ donation.
Amanda: What made you decide to bring your crusade online and start Transplant Café?
Nelson: This had much to do with my own entrepreneurial and business endeavors. The reason is that I had developed an interest in ecommerce as far back as 2000 just around the time that the Internet was beginning to recover from the ‘dot-com burst.’
Being in these circles and witnessing the success and emergence of web2.0 and social networking online gave me early access to information about the then future of the Internet and the little-known providers of solutions like Ning for those who want to build a social network around an interest they’re passionate about.
The writing was on the wall and after procrastinating for a couple of years, one day I decided to start TransplantCafe.com to give the transplant community a voice and an alternative as well as a short break from all of the usual conversations about health issues and doctor visits.
Amanda: What’s the best part about leading your online community?
Nelson: Definitely something I didn’t expect; the heartwarming thoughts and messages from the members and the random comment I will sometimes stumble upon of a member voicing how much the site and their new friends at ‘the cafe’ mean to them. I just never in my wildest dreams would have anticipated such heartfelt messages and touching the lives of so many people, ever!
Amanda: What has been your proudest moment as a Health Activist? What has been your most challenging?
Nelson: My answer here is almost identical to the last question about “the best part about leading my online community.” Definitely receiving the touching messages and support from the members and the recognition, support and the recommending of TransplantCafe.com by other established transplant organizations and respected transplant bloggers.
Amanda: Is there anything you wish the general public knew about transplants and organ donation?
Nelson: Yes, that transplants are not remote surgeries that happen to ‘those people,’ or ‘that group.’ But instead, transplantation is something that can happen to anyone for various reasons…even taking a pill to treat something as common as a thyroid condition .
The point? Register as an organ donor and in addition to seeing it as a great deed, also know that if a transplant is ever needed by you or a loved one, it will likely be a registered donor that will end up saving that life. Yes, there are always heroic donor families out there like the one that saved my life. Families whom in a moment of great loss somehow find the strength to save a stranger’s life by donating the organs of their loved one. But, if everyone was a registered donor, then bringing up donation to a family coping with such great loss just wouldn’t be a necessity.
Amanda: How do you raise awareness? What can others do to get involved?
Nelson: I believe a website like TransplantCafe.com is much more than just a forum to meet others going through a similar situation. It really is a real tool of empowerment! The tools available at Transplant Cafe such as videos, blogs, groups, pages, photos and integration with other social sites to name a just a few, empower and give a voice to the transplant community. They reach far into the internet and help us spread the word about organ donation and raise awareness.
From the beginning of Transplant Cafe I was aware that providing such tools to the transplant community could help ignite the creativity of the members to allow them to raise awareness further and more effectively. So, in addition to other programs and ideas in the works, enabling the transplant community through Transplant Cafe is my way of raising awareness.
Others can get involved by seeking education and making an informed decision about registering as organ donors. I would ask that they take a closer look at over-hyped and sensationalized media reports of outrageous scenarios and rare scandals and decide if registration as a donor is right for them based on their own independent research and education.
Amanda: What’s next for your community? Where do you see the conversation about transplants headed?
Nelson: The next step for Transplant Cafe is to become more effective and community like. We will focus on growing the member base, but will emphasize the activities, connections, engagement and programs that keep our audience captive and excited to be part of the transplant community.
With major advancements taking place in science, it looks like the conversation could soon switch from organ donors to the ability for doctors to grow needed organs that never reject using a patients own DNA. Until this happens though, the conversation will remain focused on the huge need for new registered donors and how to educate potential donors to move past myths and misconceptions about donation.
Amanda: What do you do when you’re not advocating?
Nelson: My interest in ecommerce started all this for me, so when I’m not working on Transplant Cafe I am working on my Internet business projects in various niches. You will also find me at the local gym playing a pick up game of basketball and training for the transplant games, traveling, or at the beach!
Thanks for taking the time to chat with us, Nelson. You’re doing such great work with your transplant community and I wish you the best in continuing to bring such a fun community to so many.
Be sure to “like” Transplant Cafe on Facebook!
Follow @TransplantCafe on Twitter