Blog Archives

Swell Hearts

It’s hard to believe it’s already been two weeks since the Congenital Heart Legislative Conference.  There’s still so much to write about and you’ll continue to see some posts related to the conference.  Today I’d like to highlight a really important topic for not just heart families, but lots of other people as well.  Today I’d like to introduce you to an extraordinary person that I met during the Legislative Conference.  After checking in for the Conference, I decided to walk up to a random table and introduce myself.  The first person I met was a 19 year old named Jacob Kilby who was from California.  As we chatted, I learned that Jacob – like my Nolan – was born with HLHS.  At a very young age, however, Jacob needed, and received, a heart transplant.

Now, at 19 years old, Jacob needs another heart transplant to save his life.  And this isn’t you can’t just put in an order for a new heart and just wait for it to arrive.  There is a list you’re placed on and then you have to wait for the right heart.  So Jacob waits.  That’s heavy stuff.  What’s awesome, though, is that you wouldn’t know if you got to know him a little bit.  He’s got a ton of energy, is a surfer, and has a great sense of humor and adventure.  I was really fortunate to spend the two days of the Conference getting to know Jacob a little bit, along with his Aunt Charity, who supports him on his journey.

The really cool thing is that he recently started his own foundation to promote organ donation called Swell Hearts.  As I mentioned before, there are no organs on-demand: they have to come from somewhere, specifically from donors.  So Jacob is taking the initiative by using his life experience to encourage people to become organ donors.  I really have to hand it him: he’s really striving to make a difference, in spite of waiting for a new heart.  He could easily sit around and wallow, but he works hard to make the world a better place…and I really believe he’s going to achieve some great things!  Check out his video:

According to the Mayo Clinic, there are over 100,000 people in the US awaiting an organ donation.  That’s an insanely high number, and sadly many do not get the call that they will be receiving an organ and that’s a real tragedy.  I’m an organ donor.  Are you?  If so, great job!  If not, why not?  There’s a lot of myths surrounding organ donation.  Some people think doctors won’t work as hard on you if you’re in an emergency once they find out you’re a donor.  This is completely untrue: doctors will do everything they can to save your life, just ask any physician.  Some people worry they can’t have an open-casket funeral if they donate organs, but this also isn’t the case as there will be no visible signs of donation.  You can read more myths about organ donation here:  And no, if you choose to be a donor, no one is gonna grab you in your sleep and remove an organ.  C’mon son.

For heart parents, this subject matter is difficult but crucial for us heart families.  The reality is that some HLHS kids – like Jacob – will need a heart transplant even if the three surgeries are successful.  Obviously I hope Nolan doesn’t need to go through this, but IF he does….then I hope someone chose to be a donor so that there is a higher chance of a heart being available.  There are way too many kids – and adults – dying because they’re awaiting hearts and other organs.  I implore you to please become an organ donor.  PLEASE.  Check out Jacob’s website and read his story and then consider being a donor.  You can save lives long after you leave this earth.  Somewhere right now I bet there is a boy about Nolan’s age who is struggling to cling to life and his parents are hoping and praying for a heart to become available.  What if that was your child?  If it was your child, I bet you would want everyone you know to be a donor.  So encourage your friends to be donors, then encourage them to encourage their friends to be donors.  Let’s make this thing grow…for Jacob, and for all the 100,000 others like him who are awaiting life-saving help.

It was really a pleasure getting to know Jacob during this trip.  We had a few adventures like a late-night cold walk to the White House and taking the Metro to the airport in rush hour.  I’m glad I got to meet him…he’s doing extraordinary things and I wish the very best for the Swell Hearts Foundation and above all, I hope and pray that he gets the phone call about his new heart very soon.  There’s so much left to fight for!