Jason's Heart & Liver Transplant Journey

10/20/2025

It was an absolute honor and pleasure to meet with these folks at the SV One Patient Day conference I attended in Indianapolis. I hope someday to go tour their facility. What these innovators are doing for the heart/ CHD community is AMAZING! These folks are the common day equlivent of Dr. Michael DeBakey.

HeartWorks is the world's largest team dedicated to curing congenital heart defects. Together, we build hearts.

10/11/2025

Just wrapped up an amazing day and 1/2 single ventricle Confrence in Indianapolis, IN. To get together with all these amazing congenital heart patients, meet with industry leaders and finally meet one of my transplant mentees and her husband fulfilled me with such great joy. I look forward to next years adventures and forward motion of all of our ideas and progress.

10/07/2025

09/25/2025

Scary

Federal regulators are moving to decertify the Life Alliance Organ Recovery Agency in Miami.

09/23/2025

It is because of these great Doctors, I’m still alive.

09/18/2025

If you haven’t watched the first half of Kelly’s story yet, you can do that here: https://www.youtube.com/playlist?list=PLI8WIcFEP7fLYniJfn3RMkvZViLANJWsV~Cl...

08/20/2025

Us CHD kids be like…!

08/09/2025

Do I Miss My Old Heart?
People keep asking me if I miss my old heart, like it was a favorite car I traded in or a dog that ran away. Let me be clear, my old heart and I had a complicated relationship. Sure, we were together for decades, but toward the end, it was kind of a one-sided deal. I did all the work, and it just sat there sulking, skipping beats, and threatening to quit at the most inconvenient times.

Do I miss it? Not really. I mean, I don’t keep a picture of it on the mantel. Although, yes, I do actually have a picture of it. I asked the surgeon to take a photo of my old heart and my new one, side by side. I keep it on my phone so I can gross people out… I mean, show people. There’s nothing like pulling up that shot at the dinner table when someone asks how I’m doing.

If anything, I remember the years of huffing and puffing like I was climbing Mount Everest when I was just trying to bring in the groceries. Now, with my new heart, it’s like dating someone who actually likes me back. We’re still figuring each other out, of course. It has its moods, and I have to keep it happy with a buffet of medications every day. But it beats on time, doesn’t pass out on me, and hasn’t once said, “I’m done here.” That’s a big step up in my book.

Sometimes I wonder where my old heart ended up. Did it go out in a biohazard bag? Is it in some medical school fridge with a label that says “Don’t eat”? Either way, I wish it well, but I’m not writing it love letters. It had its shot, and it took early retirement.

So no, I don’t miss my old heart. I’m too busy getting to know this new one, enjoying the fact that I can walk across a parking lot without feeling like I need a nap. That’s not nostalgia, that’s progress.



Frederick M Hueston, Author, My Heart Journey, The First 90 Days: What They Don’t Tell You About Recovery (But I Will)

08/07/2025

Because of my transplant, I was able to see my son buy his first home!

08/02/2025

Well this sucks. No, it’s not a scam, I called the phone number on the back of my insurance card.

07/15/2025

Yesterday I re established my transplant care back at Stanford. I’m so delighted to be back home. Dr. Tutenberg met with me and was still so pleased at my outcome. He said my echo looked great and to come back at my annual. I’ll now be seen twice a year, my annual and 6 months later (via video visit).

While there I dropped in to finally meet Sara. We have been talking alot over text and phone about the whole transplant process. I have shared with her my experiences and answered her questions As of today, Sara has been waiting 6 months in Stanford for her heart & liver transplant. Although a bit discouraged, she certainly has the same thrivers drive I did which means she will do very well. I ask for prayers that she gets her gift soon as I know very well she is ready to live.

06/09/2025

Today I was so honored and excited to finally see my friend Jeni Busta. Jeni had her heart & liver transplant on March 2, 2025. She followed my journey and reached out to me very early on in my journey. I later discovered she lived only a mile (or so) down the road from my grandmother so naturally I had to meet her and her husband Nick. We all became immediate friends and have had some wonderful get togethers the most recent was last September Jeni was my roommate in St. Louis for the Fontan Outcome Network Confrence. Jeni had her Fontan at UCLA (Same as me) and has always been in awe of the fact I was the first Fontan patient at UCLA. In fact we share many of the same physicians down to our pediatric cardiologist Dr. Fredric Leong.
Jeni called me the day we were boarding our cruise this year to tell me she had gotten the call. Finally today we got to check up on her in person. I’m so grateful she is doing well. I continue to pray (and ask you to also) her kidneys wake up and begin functioning on their own.
Love you Jeni, glad I can help mentor you through this incredible process.