After an emergency liver transplant, Nelson Freytes, CEO of Transplant Media, dedicated his life to educating the public through aggregated online news about the transplant community.
Nelson Freytes
CEO, Transplant Media
Your transplant story is truly unique, as you only learned you needed a transplant after the surgery had taken place. How did this experience shape your perspective on life and motivate you to start Transplant Media?
Normally a transplant recipient knows they are listed for transplant and are added to a waiting list until a matching organ is available for transplant. In rare cases like mine, you find yourself in need of a transplant with no time for the waitlist, and in my case, I became comatose and learned I had received a new liver only after the transplant took place. This was due to an allergic reaction to a thyroid medication.
This was literally a change of reality that seemed to take place similar to a dream, because as far as my perspective goes, I went out of consciousness in one reality and came back into consciousness in one where I had a new liver in my body. Because of this, you will notice the term ‘a new paradigm in transplantation’ in a lot of the descriptions I use for my business and other communications related to my work.
I also feel that this “paradigm shift” experience motivated Transplant Media because having not first gone through the process of waiting for an organ, I was very healthy and active. Once I received my new liver suddenly, I think I wanted to merge my pre-transplant experience as an active person with no medical limitations to my new post-transplant reality. This is when I discovered the U.S. Transplant Games, and my pre- and post-transplant worlds were finally fully merged and balanced!
The U.S. Transplant Games was an Olympic-style competition where transplant recipients from all over the United States competed in various sporting events. Once I participated the first time, I was hooked. It helped me feel like my pre-transplant self again. Plus, seeing other recipients excel and thrive athletically was a feeling I didn’t know was available to me as a recipient.
It was then I felt that I had to somehow harness and experience the same but on a regular basis, since the games took place only every two years. For this, I merged two of my worlds again, but this time it was my new transplant recipient world with my professional world of internet marketing, and Transplant Cafe was born.
Transplant Cafe was one of the first online social networks catering exclusively to the transplant community, and it grew very fast! It was a place that helped me and the transplant community continue to focus and relate with that side of transplantation that reminds us of the great things in life. It included recipients, those waiting for a transplant, and all of our diverse supporting friends, family, donors, and transplant professionals.
After a few years, Transplant Cafe had to be retired, but I simultaneously had the idea for Transplant News, which is now up and running and growing steadily. Transplant News is exactly what the name suggests — a place where the transplant community gets to experience the hundreds of amazing new patient stories and many other happenings that take place in our community.
Transplant News is the current focus at Transplant Media, but future projects implementing new available technologies are in the works to continue to support and serve the transplant community with access to more transplant information in a faster and more centralized manner.
Transplant Media has become a vital resource for the transplant community. What gaps did you initially see in the information available to transplant recipients, and how has Transplant Media worked to fill those gaps?
As a recipient, it is important to see the success of organ and tissue transplantation on a daily basis. At least, it is for me and many patients I know. This is why the Transplant News mission statement is “Transplant News brings you the news and content that matters to the transplant community. From patient stories to the latest in transplant innovation, Transplant News is your window into the world of transplantation.”
For me, the gaps that were identified and now filled with Transplant News were finding and presenting these stories to our community and beyond, so that we continue to see how others continue to thrive and be touched by transplantation.
Misinformation about organ donation and transplants can be pervasive. Can you share some of the most common myths you’ve encountered, and how Transplant Media works to dispel them?
Yes, this is a very big problem in our community, and unfortunately, there is quite a long list of myths and misconceptions about transplantation. In my experience, the most common misconception is that hospitals have motivation to let anyone pass away in order to use their organs to save others. This misconception alone is likely responsible for the most resistance to registering as an organ donor.
The truth is that hospitals are made up of very caring people who pick the path of medicine to help, cure, and heal — never the opposite. If this isn’t enough, people should understand that hospitals are made up of different areas of care where patients are taken if needed, depending on their condition. This means that there are different teams of doctors that are rated, monitored, and personally care about their performance and success rates. Rest assured that doctors take pride in having a great success rate, and when that rate shows any signs of decline, there are systems in place to make sure it doesn’t take a toll on human life.
Another big one is thinking that as a donor, they or their family would be responsible for financial costs. This one is a big deterrent to donation as well! The truth is that organ donors are never responsible for any costs associated with donation. This is something that is covered by the recipient’s insurance or any other systems in place to fund the procedure, but never the donor or their family.
At Transplant Media, we will soon relaunch our myths and misconceptions education campaign. This is a series of online and social media posts in the form of image postcards that have a myth and its correction posted. They will be shared on all of our platforms and everyone will be invited to share, repost, print, and start a conversation about the content.
Later, I hope to work on a series of video Reels where single Reels will discuss individual myths and misconceptions and invite viewers to register as organ donors through calls to action and provided links. The idea is to partner up with an experienced team that can help give both campaigns a chance to go viral by implementing their expertise in highly shareable content creation.
With over 100,000 people currently on the national transplant waiting list, what do you believe are the most effective ways to encourage more individuals to become registered organ donors?
I think this can be accomplished by working on, and eventually eliminating, the gap that exists between a person and their concept of who a transplant patient is or could become. You see, we all have a sense that things that happen in life are things that happen to others who are external to ourselves. I believe the key is to help more people become aware that “them” or “that group” is “us.”
Take my own experience of becoming a liver transplant recipient, for example. Even the day before going into the hospital, I had no sense of what organ transplantation was and even less of why I should consider registering as an organ donor. As you now know, that changed in literally only a few days, when I became aware that I had just been given a new liver. For other family members like my mother, who was aware of everything going on with me when I became sick, that paradigm shifted even faster!
Therefore, I believe there is a need for a massive campaign to have this conversation on a big scale, but one led by the pursuit of knowledge, not fear. We need an honest conversation where we inspire others to register to be organ donors, but not lead by the idea that they need to become one. Instead, the knowledge helps put other things into motion, from as simple as minimizing beliefs in myths and misconceptions to governments taking notice and becoming more proactive in doing their part to create an environment that allows more innovative ideas to thrive and come to pass faster.
What are some of the current challenges facing the organ donation and transplant community, and how do you see these challenges evolving in the future?
I think the transplant community has earned the right to be given the same national attention that other deserving causes get.
The challenge is likely in branding a single word as an umbrella word that covers all of the conditions covered in transplantation. In this case, that word would likely be “donation.”
I believe that with a well-orchestrated campaign backed by the government, influential organizations, and companies in our community, this could become a national conversation that loudly shows everyone that registering as an organ donor is an act that in itself helps us all.
What message would you like to convey to the public about the importance of organ donation, and how can individuals best support the transplant community?
I would convey the importance of understanding that we are all “other people.” You are me and I am you, and what happened to me really happened to us, because the need for an organ transplant can happen at any moment, and sometimes for the strangest reasons one would never have predicted.
The best way to support the transplant community is simply by (1) registering as an organ donor, and (2) understanding that just doing that means everything, and nothing else is required — not even having to actually become a donor, which all of us in the transplant community, including the medical community, hope is never the case.
