Champion

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.

On the other end of my emotion spectrum, if I am honest with myself, there is a feeling of longing and sadness this week of thanks-giving.  The happy, strong, “Polly Positive” side of me doesn’t like to admit or acknowledge this at all.  Polly calls me weak, over-emotional and ungrateful when I spend time reflecting on feelings or emotions that have a low vibrational energy.  Sometimes I have to tell Polly to fuck off, and just let me be with feelings, but she’s traditionally a hard bitch for me to stand up to.  I am a positive person, I am grateful for this experience exactly as it has played out, AND on my donor anniversary, one of the many things I experience is a little sadness.

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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.  It’s our special day!  BUT, all I know about the recipient is that they were doing well 6 months after transplant, and that they have chosen to remain anonymous, and not connect.  I assume they are alive, but don’t really know that either.  So, if today is comparable to a wedding anniversary for example, it kind of feels like the other person in the equation forgot to show up to the anniversary dinner.  I feel like I am missing out on an opportunity to connect with someone important (my recipient), about something really important (our shared experience).

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!

LL

 

 

The Goralski Clan

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.  

10 brave strangers, bound for life.

Well done Bethany and Hannah!!

WGN Version Here

 

 

 

 

 

 

 

2nd Story, Pub 626

I discovered 2nd Story a few years ago, and was immediately drawn to their mission and core values:

Mission

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.

Core Values

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.

 

 

410 Very Special People

It’s official!  We Set a Guinness World Record!

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Photo Credit:  John Martin Photography

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.

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Photo Credit:  John Martin PhotographySister 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.

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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!

333IMG_1323Photo: 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.

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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.

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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.

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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.

Congratulations donors!  We did it!

 

 

 

Living Donors Meeting to Attempt Guinness World Record

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.

On April 21, 2018, we are hosting an event called

Living Donors Meeting to Attempt Guinness World Record

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Our goals of the events are:

  1.  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.
  2. 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.”
  3. 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.
  4. 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.
  5. 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!

American Living Organ Donor Fund

COTA

Gift of Hope

Gifts of Gratitude: Kidney and Transplant Jewelry

Living Kidney Donor Network

National Kidney Foundation of IL

Northwestern Medicine

Organ Transplant Support Inc.

Team IL/Transplant Life Illinois

Transplant Games of America- IL

Transplant Support Group of Northern Illinois

Call to Action

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!

Thanks for reading,

LJDL

Sawadee kaaaaaa!  1 Year Anniversary!

I donated “Lefty” a year ago today, 11/22/2016, and I am still alive, ready to celebrate!  Rob and I are in Thailand today, 1 day ahead of the US, so technically we are celebrating Lefty’s departure 1 day short of a year but on the correct date. 🙂 Thailand is one of my favorite places, so the plan is to go SCUBA diving all day and then have good Thai beer and curry for dinner, and fit a Thai massage in on the beach at some point. It doesn’t get much better than that for us!

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I had my 1 year check-in a few weeks ago, and all of my numbers are perfect, meaning, 1 kidney is doing the work of 2 with no problems, and it likely doubled in size this year and is a “super kidney.”  I feel 100% and no different than this time last year.

Soooo, what’s next?

I would like to see a conscious effort to change the language we use when we talk about organ donation. Have you ever heard someone say “there is a shortage of organs, 23 people die each day waiting for an organ?”  That’s a statement comes from a place of scarcity!  The “shortage” is nothing more than a perception.  There are millions of people just like me walking around with the ability and willingness to donate an organ while they are alive.  The possibility just isn’t in their awareness yet.  Do you see?  There is not a shortage of organs, there is a SURPLUS of organs, enough for everybody that needs one.  My mission is to bring the concept of an organ surplus into society’s consciousness.  In addressing the surplus of organs out there (versus the shortage), I believe we can create the opportunity for people to give big and operate from a place of opportunity and possibility.  It feels good to give big, and it feels good to be the solution to the problem.  We all innately want that, and this act of service to another human is a game changer, what an amazing way to experience purpose!  The ripple effect of this kindness has the ability to change the world that we live in.  Let’s choose abundance, choose service, and be kind.

The next step is getting onto the speaking circuit with my dad.  We have a family story that if told with passion, can help other people. We are seizing the opportunity to create a legacy together!  We went to Mikki Williams Speaking School together and have started crafting our story which will eventually be a Ted Talk.  We are having fun doing this together, and while we have a lot of work to do, we will rock it.  It’s going to be amazing.

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Thanks for reading!  Call me if you want to donate your parts at 312.927.7655, and email me if you would like to be a guest blogger covering any transplant topic at laurie@swiftpassport.com.

-LJDL

 

It’s a Sexy 6-Way

Wow, this was an amazing week, one of the busiest weeks of my life- I have no clean clothes and haven’t unpacked from my weekend travels!  But it’s been a memorable and amazing week filled with love, excitement, growth, gratitude, laughter, new and old friends, family, Rob, and unsolved mysteries being solved!  I’ve slept in 4 different beds this week in 3 different states, but that’s not what this 6-way is about (fortunately/unfortunately?  You can decide that on your own).

It’s been 7 months since I donated, and the last I heard about what happened after my kidney flew to TX was back in January.  That’s when I learned that the chain was at least 3 transplants long and still going.  Well this week, I heard confirmation from the Transplant Team that my chain is ended and was 6 transplants long!

So this is what that looks like (with other peoples names, this isn’t my chain)…..

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The knowing of something, anything, about the details has been amazing to learn, it just helps me visualize what actually happened.  There’s a start and an end to the physical part of the journey, and now I can picture my kidney family.  So who are they?  There’s me, I kicked it off.  Then there are 6 sick people who were in need of a kidney, 5 who had loved ones who wanted to donate to them but couldn’t, so they donated forward so that their loved one could get a kidney from somebody else. How fucking cool is that?!  It’s phenomenal knowing the extent of the energetic connection I have with this group of 12 people, who I will forever be connected to, and may never lie eyes upon.  It’s just beautiful and it fills my heart with joy.  I can’t begin to describe the feeling….

Some clarity that came to me this week that I am excited about is that I want to speak about my experience professionally, and do that with my dad. We are each others biggest fans, and will have fun with this.   One day we will do a Ted Talk about this (hear that universe?!).  It doesn’t even need to be about kidneys, depending on the audience, it can be about the fact that if you have 2 of something, you should give one away.  And feel fucking phenomenal about it!

PEACE 🙂

LJDL