It seems hard to believe that it was 5 years ago today that I parted with my kidney! Looking back on this past year, it feels like it’s been a great year of growth and new connections in the Transplant World. There isn’t a week that goes by where I don’t meet a new donor or recipient. This year, when I think of what I am grateful for it’s all of the new friends, many of them living donors, who I have connected with. I don’t know if it’s an official selling point of donating an organ, but the living donor alumni club is one of the best clubs I belong to. Five years out, as I look at all of the things I have gained from being a donor, the friendships with like-minded people is at the top of my list. It’s interesting to me that the first thing we have in common (being a donor), is never the last thing we have in common.
Donor Diaries was successfully launched! Episode 6 went live this month featuring my family transplant story told via an interview with my dad- we had a great time making it together. The National Kidney Foundation of IL (NKFI) podcast, The Journey Continues, featured our episode as well! Big thanks to Monica Fox for collaborating! It was a big month for podcasting, as I also had the opportunity to be on the Uplifting Women Podcast today! Thank you to Holly Teska and Kristin Strunk for the opportunity!
The documentary series that I am working, Abundant, is making progress. The content for the documentary is coming from a staged storytelling show called CrowdSource for Life, which will feature powerful stories from 18 living donors. A major development is that we are now partnered with PBS! WTTW Chicago has agreed to be our presenting and distributing station. We will reach over 1.2 million households over a 2 year period. While our goal is not to recruit living donors, I do expect that it will inspire some people to come forward and consider living donation. If we could get 1,000 people to step forward, that could take 2,500 people off the kidney transplant waitlist. We are currently looking for funding for the production. If you or anyone you know is interested in helping fund an exciting project that will result in human lives saved, please let me know! Check out our teaser trailer here!
I am really excited to announce that Donor Diaries is launching June 1, a week from today! I have learned a ton about podcasts in the past few months, and feel like I have barely scratched the surface of what is left to learn, but I am having fun doing it! I feel great about the first 2 episodes which will launch together on Apple Podcasts. When it launches, I will post a link here to that you can find it and tune in. The more people we can get to listen in the first 2 days, the better. If a lot of people listen, then the podcast will be more likely to come up as a suggested podcast to listen to. If you are able to tune in right away, I would appreciate it! It will help get the conversation of living donation to a much broader audience, which in theory, saves lives!
Season 1 of DD will consist of 12 episodes and covers a variety of compelling living donor stories, and interesting interviews from various experts in the Transplant field. We are also following the story of Johnna, a woman who is just beginning her transplant journey. We will watch her journey unfold as she finds a living donor, and has a kidney transplant!
Before we launch, I want to give a huge shout out to my amazing producers Rob and Geoff Lee (my husband and BIL). They have been just so incredibly supportive and helpful to me through this process, and I don’t know what I would do had they not volunteered to jump in with both feet. This project brings up some vulnerability, and these guys have just been my rocks. I really hope they don’t get sick of my demands! I love you Rob and Geoff, thank you for being so available to me, and for all of your hard work. I am incredibly appreciative of all you do for me, and love working with you both so much! It’s been an unexpected joy that this has become a family effort.
Read more about Donor Diaries below, and I will give another nudge when we launch on the first!
2020 has just been such a weird year! It’s actually been a really good year for me, and has brought about a lot of positive change in my life. I really value the opportunity to have pushed the reset button on everything, and feel… RESET. That’s what I am grateful for this year on Thanksgiving. On my Zoom Thanksgiving with these guys who I love….
This Thanksgiving week marked my 4 year donorversary! I am happy to report that as one should expect I am still healthy and have no issues stemming from donating. I am healthier now then when I donated.
Here is what I am looking forward to in the world of organ donation as we launch into 2021!
Creating a Living Donor Data Base
This month, our Abundant production concluded an extensive series of surveys on non-directed kidney donors. We sought out information and revelations about the invisible cultural and sociological influences common to non-directed kidney donors. Our goal with the surveys is to find sociological commonalities in the backgrounds of participating donors and their family of origins. Once we identify the common threads and trends, we will dig deeper into the areas that are most interesting/ telling of important information. What we find in these surveys will feed the content of Abundant.
Amazingly, we have over 120 non directed donors participating in this extensive survey. Why is that amazing? Because that’s actually the biggest survey completed to date on non directed donors! There really aren’t a lot of studies done on non directed donors, or organ donors in general for that matter. That’s kind of problematic if we want to understand the long term effects of donating an organ.
I expect that we can double our sample size of participants for our survey, and really gather some interesting information about donors. What we are doing with our data for Abundant is in not academic research, and we have an opportunity here to build a bridge for the people who want to do academic research, so we will. The long term plan will be to create a non directed donor, and directed donor database. There will be an opt-in process for donors to join. The details of what organization would eventually hold and manage the database is in the works. Abigail Marsh is a psychology professor who HAS done some really amazing research on non directed donors. She discovered that non-directed donors tend to have an enlarged amygdala, where as a psychopath has a shrunken one. Interesting, right? The goal is to make a willing sample of donors available for studies like this so that there is more research out there about the effects of organ donation- that’s just going to help prospective donors make informed decisions.
More than 75 non-directed kidney donors have auditioned for CrowdSource for Life: Storytellers, the TED-style storytelling show Maitri River Productions is producing for unique content for Abundant. The live performance will be staged when it ’s safe to gather for a live show, sometime in 2021. Until then, we will work toward developing the show and finding sponsors to fund the show, while working with the chosen storytellers to develop their stories.
In reading the stories and talking to all of the donors who want to participate, we have come up with an outlet for the donors who do not get selected for the storytelling show to get to tell their story. We are starting a donor Podcast!
Our podcast will use first-hand narrative from kidney donors as the basis for addressing topics relevant to kidney donor advocacy. It will be entertaining, informative, and will make a positive and realistic contribution to the kidney donation conversation. It will also be a fun and inspiring outlet for donors to tell their stories.
I know nothing about podcasts other than I can get sucked into one and sit in a parking lot for an extra 15 minutes waiting for an episode to finish before I go into the grocery store. My brother-n law Geoff Lee of Hippie Wicked Radio will be helping us get this launched, but I am wide open to pointers, tips and support if this is your area of expertise and you are interested in helping!
Unrelated to Abundant, but also fun new territory was the launch of our new company this year, SwiftLink Worldwide. As you can imagine, our passport and visa business dried up more than a little bit with travel coming to a halt this year, so we diversified. Under our new brand we now offer shipping services, virtual mail services, physical mailboxes, FBI fingerprinting and more. We are also dabbling in printing services
In the Kidney Champion Program, a big part of what we cover is the importance of creating a mini marketing campaign to help find a living kidney donor. In addition to using social media, this includes print items such as “kidney card,” flyers to hang on public boards, car decals, yard signs, and more and other tangible items that spread awareness. There are tons of stories in the news about people finding kidneys this way. My friend Robin just donated her kidney after seeing the same car in her townhouse parking garage day after day with a car decal in the window that said “need a kidney donor, save a life.” She finally called the number on the decal, and 6 weeks later was donating her kidney (during COVID)!
To kick off our printing services, we created a one stop shop for people who participate in our KCP, and for anyone else looking for marketing materials for their Kidney Campaign. We are trying to make it as easy as possible for the people who take our program to quickly connect to the resources they need for a successful kidney campaign. Now, if they chose, they can order all or some of the marketing materials we talk about in the program in 1 place, from the same folks they took the program with, and they don’t have to be good with technology to do it! We will be splitting the proceeds of these orders with Transplant Village. We are working on finalizing our prices which will be competitive, but here is the one stop shop in progress.
As this catches on, we plan to start adding additional designs and products to our website that will support Kidney Campaigns. Our 2.0 version will also include a collaboration with my soul sister/marketing guru Amber. She’s launching a new company that offers a unique solution for our
participants to run successful social media campaigns. Having helped run a few of these campaigns for people seeking kidneys, I personally had a hard time doing it and ran out of things to say and struggled to come up with quality posts. Her solution (which is still top secret) takes the thinking out of the posting and makes it painless. Between her tool and our one stop shop, literally any family seeking a kidney would be able to employ every strategy that we promote in our program with minimal effort. I think it’s going to add a lot of value to the program and am really excited about it.
Lots of exciting things to look forward to this year!
Wishing you a wonderful Thanksgiving holiday and week of gratitude.
There is some exciting stuff happening in my corner of the Transplant World! I just joined the Maitri River Productions team to produce a documentary series about living kidney donation. It’s called Abundant.
Abundant shines a light on the growing movement to eliminate America’s 100,000 kidney deficit through living kidney donation. Every year, roughly 8,000 Americans die waiting on a kidney donation that never arrives. The leading experts agree the only solution to the American kidney deficit is an increase in kidney donation by living donors. Abundant explores what it will take for America to face this problem from a space of abundance rather than scarcity.
My first order of business is a fun one, and that is to recruit non-directed living donors to contribute to our project. There are 2 ways to do this.
First, we are looking for as many non-directed donors as possible to participate in a series of surveys to help us understand the commonalities and sociological trends of extreme altruists. This could very well end up being one of the largest studies ever done on non-directed donors, as there have been very few studies done on NDDs. While I really look forward to seeing the findings, I think I am more excited about creating a non-directed donor community!
Second, we are looking for non-directed donors interested in participating in our storytelling show. Ten storytellers will be chosen to present their approximately 12-minute story in a format much like a TED talk. These donors will have a unique opportunity to work with a professional story editor, producer and director to help them make the most out of their story and performance. The show will have a live audience and streaming audience- it will be an unforgettable experience for all who participate and listen! To audition, read more here.
The mere fact that I have the opportunity to work on a project of this size and scope is abundance in itself. I can’t think of a more artistic and exciting way to be a part of growing this movement that is so near and dear to my heart. I will be learning so much from this! My mission is to shift the “organ shortage crisis” paradigm; in my view, people can see the same problem from a space of abundance and recognize that we actually have an organ surplus. It feels pretty amazing to have the opportunity to communicate this message professionally to a much larger audience than I would have otherwise had access to. I am very grateful for this opportunity and will be updating my blog more frequently with progress!
9 Years ago today was a VERY memorable day. It was the day my dad got a liver transplant.
Today I give thanks to my dad’s donor, and to his donor’s family. I imagine that today is probably a sad anniversary for that family. It’s always felt unsettling to me that we celebrate a day that another family mourns.
I have no idea what kind of thought went into our donor’s family deciding to donate their loved ones organs. It could have been that the donor made it clear that he would donate his organs at the time of death, but maybe that wasn’t the case. Maybe he hadn’t considered organ donation, many people don’t. Maybe it was an easy decision for his family to make, or maybe it wasn’t. But they did.
Organs that can be donated for transplantation include kidneys, heart, lungs, liver, small bowel and pancreas. Tissues that can be donated include eyes, heart valves, bone, skin, veins and tendons. It’s amazing to think how many people besides my dad might still be alive today because of this family’s decision to donate their loved ones organs.
So to our donor family- THANK YOU, your decision 9 years ago has positively impacted the life of my family and many others. You are brave to have done it, and I can tell you that we will always pay the gift forward. His liver is in great hands, and is in a body that doesn’t ever stop giving, and helping others.
You can read about Dan’s transplant journey on Dan’s Liver Blog, “as the Liver Turns.” He is up to all kinds of stuff these days, including launching the the Kidney Champion Program at Northwestern with me!
Some food for thought today……. 95% of Americans believe in organ donation, but only 58% are signed up to be organ donors. If when you die, you would like your organs to be donated, you should do 3 things.
Today is my 3-year kidney donation anniversary! It’s fitting to me that I got to donate a kidney as an act of gratitude, during a week that is culturally all about gratitude (thanks-giving). That’s just cool from any angle you look at it, and the timing, so incredibly perfect. I love 11/22 in the sense that it’s a good stopping point to look back for a second and appreciate all of the different aspects of this journey. Sometimes you can’t see progress or growth until you pause, turn around, and acknowledge the milestones behind you. Someone smart said “only spend 20% of your time looking back, and 80% of your time looking forward.” Thanksgiving week is when I use up part of my 20% of looking backwards, and I focus on truly living in gratitude.
Over pillow talk with Rob this morning, we were talking about anniversaries. You have personal ones, and ones that you share with another human or group of humans. A personal one might be someone celebrating a year of sobriety, or a job anniversary. Then you have the anniversaries specific to an event you shared with another person. Like a wedding anniversary, or a Facebook friendiversary (haha). For me, today’s anniversary falls into the second category- one you share with another person. It’s an anniversary I share with my kidney recipient. But it’s still sometimes odd knowing who that is. I have grown to love this mystery, and the thought that anyone I pass on the street could have my kidney. We are all one, and this anniversary reminds me of that.
This year, when I take stock, what makes me feel happy, hopeful, motivated, and proud, is the forward momentum of Transplant Village. This past spring I got to help launch a program called the Kidney Champion Program at Northwestern. It’s something my dad and I have wanted to do for years, and it’s finally come to fruition. It’s a once a month 2.5-hour workshop at Northwestern where we teach people in need of a living donor, strategies on how to find a living donor by effectively sharing their story and leveraging their spheres of influence to communicate their need for a donor. When you can do this, a donor comes forward like magic. Version 1.0 of the program is already helping people and making an impact. It’s not rocket science; I believe anyone in need of kidney willing to do the hard work can find a living kidney donor using our strategies.
So many people who come to the workshop are frozen and don’t know where to start. We give them the big picture on how to approach the challenge of finding a kidney, but then they get home, they feel overwhelmed, freeze up, and don’t do anything at all to change their situation. It’s been eye-opening, and shocking really, to see how many people who have come to our workshop keep their sickness and need for a transplant a secret from everyone in their life, including their families. That makes me so sad! Over the next few months I am working on making a “boot camp” email campaign for people who go to our workshop. It will break our workshop strategies up into daily or weekly task-oriented challenges for the person in need of a kidney to tackle one day at a time. I want to see what happens if we can guide them through the process with not-so-scary baby steps, so it doesn’t feel so overwhelming.
I have a million ideas in my head about what we can do to help people through this program, and a lot of freedom to put the creative ideas into action. It’s exciting stuff and I feel positioned and supported to succeed. It’s all about empowering people, and I know we can do that. We have a great team behind this program (Dad, Harvey, Marilyn, Dr. Shetty, Dr. Christopher, Ali, and Bethany- that’s you!). So much of the success of these things depends on getting the right people to the table, and I know we have that. We are a a great team. Stay tuned for exciting and inspirational developments! This is my 80% of looking forward that feels pretty damn good and meaningful.
That’s it for this 11/22 day, thanks for reading and may your 11/22 be as nice as mine!
Back in 2011, when my dad received a lifesaving liver transplant, we met the Goralski Family. The transplant floor isn’t that big, so as you walk the post surgery laps around the floor, you run into other people doing the same thing. That’s where we met Josh, a teenager who had just donated a kidney to his dad, Mark. They were a few doors down the hall from my family and they became our friends.
Fast forward to September 2018… Mark passed away. Josh’s kidney gave him a new lease on life, but the nature of transplants is such that it’s really common to need a second transplant. Mark had 2 daughters, Bethany and Hannah, ready to donate a kidney, but wasn’t quite healthy enough to be eligible for a second transplant. Had he been healthy enough, it may have been possible for his daughters to donate, but sadly it just wasn’t in the cards.
This past March, Bethany and Hannah BOTH donated their kidneys to strangers 1 day apart, to honor their father. They both started transplant chains that are still in process. This means their gift still has tremendous momentum, there are upcoming transplants happening that is a direct result of their donations. AND I AM SO DARN PROUD OF THEM!
I am so grateful that these are the peeps that were put on my path. Between our 2 families, we have been there for each other through 2 transplants (Dan and Mark), and 4 kidney donations (Josh, me, Hannah, Bethany). That’s a special bond, and a lot of organ sharing.
Today, Northwestern organized for all of the people in the transplant chain (so far, there are more to come), to meet in person live, in front of the press, and I got to be there! I got to watch my friends meet their kidney recipients for the first time. It was a privilege to bear witness.
I discovered 2nd Story a few years ago, and was immediately drawn to their mission and core values:
We want to live in a world driven by empathy.
We believe that stories are what bind us to each other.
Therefore, we create spaces where people can share and deeply listen to one another’s stories.
INCLUSION: We believe our lives and stories are richer when everyone is at the table.
CRAFT: We believe in approaching our work with skill and thoughtfulness.
COURAGE: We believe that creating change in the world takes fearlessness and grit.
I ended up taking a story telling class for fun, and after a ton of feedback and revisions of this story, here is the result! Thanks to the amazing crew at 2nd Story for the support and guidance! This experience, from start to finish has been cathartic and pushed my comfort zone in many ways. I am grateful to have had the opportunity to shape and share my story.
On April 21 of this year, I had the most incredible opportunity to make history. Together with 409 other living organ donors, we established a Guinness World Record for the Greatest Number of Living Organ Transplant Donors in 1 place. Even as I write this and reflect back on the day, I get goosebumps and a little bit teary-eyed thinking about the day, and what it represented. I also feel immense gratitude for all of the people who worked together to make it happen.
Photo Credit: John Martin Photography. Sister who donated to brother a week previous
The part that really sticks with me are the people that I met. THE STORIES, OMG! There was a sister who had donated to her brother less than a week before the event. Another woman donated over 30 years ago, back when you had to have a rib removed to donate a kidney at some hospitals, and she proudly wore her rib (yes the bone), on a necklace. There were my new Canadian friends who BOTH had donated their kidneys at separate occasions, who had never met another living donor besides each other until the event. There were more than 5 nurses who had donated kidneys! Nurses are unsung heroes as it is, but to donate a kidney and set that kind of example in the medical community is truly powerful.
Photo Credit: John Martin Photography. Medical peeps with 1 kidney
There was a family from India who became my friends online- can you imagine that their first taste of the USA was the Donor Rally? Needless to say that had a very warm welcome and enjoyed Chicago!
Photo: PK Rattan Family from India made news in India.
There were organ recipients there showing support, and others who were there because they were in need of a kidney or liver. There was even 2 families in the paired kidney exchange program who met for the first time the morning of the event.
Photo Credit Terry Martin
It was a day filled with laughter and tears, and you couldn’t help to be inspired just by being there, witnessing. At the end of the day, whether we made the record or not, this event was about coming together, and we did that in a way that I KNOW left an imprint on the hearts of the people who were there. My heart is forever inspired by all of the people who were part of this day, and my life is richer to have met so many kindred spirits on this journey.
The original online girlfriends, Kate Griggs and Rebecca O’Marrah
Much of this blog is about how and why we can and should “flood the donor pool.” I really do believe that we will achieve this one day, in my lifetime. And after the Donor Rally, I have no doubt that many of the people who will drive this shift in thinking were with me at the rally. These are the change-makers who will inspire others to take a second look at living organ donation.
Photo Credit: John Martin Photography. Transplant Village’s Goralski Trio
The proceeds from the Donor Rally have been used to start a living donor patient assistance fund at Northwestern. When you donate an organ, the recipient’s insurance covers your expenses. That being said, most donors end up paying over $2000 in out of pocket expenses such as hotel expenses, travel, time off work etc. This fund is meant to offset that cost. It’s pretty cool that today’s donors came together to financially support tomorrow’s donors. We need to keep this cycle of giving paying forward, so that the donation process is easier for the next guy in line. We did that.
National Donate Life Month was instituted by Donate Life America and its partnering organizations in 2003. Celebrated in April each year, NDLM features an entire month of local, regional and national activities to help encourage Americans to register as organ, eye and tissue donors and to celebrate those that have saved lives through the gift of donation. If you are not an organ donor, but would like to be, you can register to be one here, it takes 2 minutes!
This year, with the help of my friend Kate Griggs, and the Support of Transplant Village, we are organizing a unique and special event to shine a light on the importance of living organ donors. Donate Life America and National Donate Life Month focus on the importance of donating organs at the time of death. While this is important, deceased donation is actually a small part of the solution to our perceived “organ shortage.” Even if every American signed up to be an organ donor upon death, we wouldn’t come close to meeting the demand for organs that currently exists. This is one of many reasons why living organ donation deserves more media attention, people don’t realize the scope of the demand, and what it would take to meet the demand for organ transplants. I believe that if living donation became mainstream and received the same amount of attention that deceased donation gets, that we as a country will come much closer to meeting the needs of those waiting for a lifesaving transplant. More than 23 people die each day waiting for a lifesaving transplant. To change that statistic, we need more people to donate their organs when they die, AND we need more people to donate organs while they are alive.
Create a new Guinness record buy gathering 250+ living donors together in 1 place. This record does not yet exist but will when we can prove we had 250 of us all in 1 place.
Provide a place for donors to meet and talk to other donors. So many of us have met and supported each other online and over the phone, but have never met in person. This is a unique opportunity to meet other people who “get it.”
Raise awareness: We want to connect with as many media outlets as possible. With the help of the media, we will tell our stories, offer information about living donation, and inspire others to consider living organ donation. This will help “normalize” living donation. If you can help us do this, please contact me directly at 312.927.7655.
Raise money: Insurance pays for much of the costs associated with being a living donor, however in reality, being a donor ends up costing money for most people. Whether it is time off work without pay, medical supplies, or food and hotel expenses, there will always be costs that are not covered by insurance. We believe that more people would consider being a living donor, if there wasn’t a huge cost associated with donating. Funds raised from the event will start a living donor assistance fund at Northwestern, to help future donors offset the cost of their donation.
Connect the transplant community: Transplant Village has a mission to be inclusive of the transplant community as a whole, and to be the connectors within the community. The following Transplant Organizations have already committed to supporting our event, and we are so thankful for their support!
OK, so if I still haven’t convinced you to share your spares yet, that’s OK, I have a back up plan for you. My call to action is to come support us, and make a donation by being a sponsor or buying tickets so that someone who does want to be a donor doesn’t have to worry about going into debt to become a donor. Please share this event with anyone who is interested in supporting living organ donation, and show up for the event as it’s going to be a lot of fun to watch a world record happen!