On March 4, 1976 I was born with 4 congenital heart defects: Atrial Septal Defect,
Transposition of the Great Vessels, Sub-Aortic Stenosis and Pulmonary Atresia. In layman terms, I was born with 1 chamber of my heart working, not 4! All four defects individually are very common in males, but to have all 4 in 1 is extremely rare.
At six weeks old, I underwent my first surgery called a Pulmonary banding. At that time, the doctors gave me a life expectancy of 3 years. At 6 years old, I began to suffocate to death and was told of 2 possible options for survival. Both options had never been done on a child before and therefore would be an experimental surgery. The first option was a Fontan procedure, which would give me a 2% chance of life. The other was a heart transplant which would give me a 1% chance of life.
My mother choose to play the numbers game and went with the Fontan. I was the first child to have the Fontan procedure done on at UCLA therefore, I was used as a study case for all other Fontan patients.
Growing up with CHD (Congenital Heart Defects) I was a happy go lucky child that only
knew innocence as a child would. I was always positive with every situation. I never knew of or fought with depression. My mindset was always I can do it. However, CHD left me very
vulnerable to teasing, physical limitations and constant monitoring. Fortunately, my mother never placed any limitations on me. She insisted I get outside and do whatever I wanted.
Even the doctors told her they didn’t know what limits I would have. I discovered my own limitations and quickly realized nothing was truly out of my reach. I played, ran, bike rode, and swam just like everyone else.
The only difference is my stamina eventually would catch up with me. My grandmother, however, would be the family member that would be overly cautious with my activities. She was always worried when I rode a bike, swam or played rough. She later in life admitted to me that had she raised me, it would have been in a bubble. I recall often being teased about my purple lips. The kids would always ask me if I wore lipstick. Also, they would tease me about my scar’s causing me to be very conscious of my self image.
At age ten, while riding a bike, my shoelaces got caught into the front wheel causing me to go over the handlebars and landing hard on the pavement. That was the start of my SVT’s,
(Super-Ventricular Tachycardia). This is where the heart beats faster than it should. I was in an extreme amount of pain and recall describing it as someone kicking me with a boot from the inside of my chest. SVT is a side effect of the Fontan due to the scar tissue interfering with the electrical conduction of the heart. My mom, not knowing what to do called the ambulance.
The medics arrived and told her what it was. I was rushed to Thousand Oaks where my pediatric cardiologist was. The doctors first tried to “reset” my heart by sticking my thumb in my mouth and having me blow real hard. They also tried shocking me by sticking my head in ice water and lastly by unexpectedly dropping my bed. None of these worked so they had to resort to shocking or cardioverting my heart back to normal sinus rhythm. The SVT’s continued on a couple times a year for a few years. Each time only cardio version worked. Finally the doctors decided to do ablation on the scar tissue which stopped the SVT’s all together. The ablation is done thru a catheter which is a wire that goes up my groin to my heart. At the end of the wire is a laser and a
camera and they use the laser to disintegrate (or ablate) the old scar tissue. I then lay flat in the bed for a few hours and am sent home.
The Fontan surgery was successful until I turned 21. At that point, I began to get very
fatigued and needed another re-construction of my heart called a Lateral-Tunnel Conversion
Fontan. It too was a success. Life continued on like normal and later the following year I would have my first and only child. This brought a huge concern as I was afraid I would have passed on my heart condition to him. The Lord had other things in mind. He blessed me with a healthy boy named Corbin.
At age 27, my heart condition began to get in the way of my career as a DJ for a local
radio station. I went to my mom’s house for the weekend and wasn’t feeling well. Very weak, and short of breath I checked into the ER. There the cardiologist, Dr. Peters, kept me overnight for observation. The next morning he came in and told me I needed a pacemaker. My heart rate was only 30 bpm during the day and at night it was dropping down into the teens and single digits. I was asked too if I would were released would I be on the next plane to UCLA as they were to afraid to touch me and wanted me to go to the hospital where all my surgeries had been done? I told him I didn’t have the funds to fly but I would drive down. Dr. Peters said “No! Too much of a risk. What if I sent you to San Francisco?” I responded “Only if my surgical team were there.”
Finally he said he would be back. Dr. Peters returned a few hours later and said “Here is what were going to do. You will be transported by ambulance to a fixed wing life flight aircraft. Flown to Santa Monica, then taken by ambulance to UCLA for the pacemaker.” I agreed and called my mother who told me she would meet me down there. Upon arrival at UCLA, I heard a familiar voice. It was my mother asking the nurses desk where I was. I was shocked. She told me she drove 110mph a distance of over 300 miles and made it there before I did flying! I was in awe. I had a pacemaker implanted…3 times as there were many complications.
Due to the pacemaker, the doctors said I couldn’t work in radio anymore as the radio waves and magnetic field would effect the pacemaker. Although I never faced depression in my life because of my CHD, this news did make me depressed. I realized for the first time in my life how my CHD can really effects my life.
For 2 years, I couldn’t listen to the radio as I missed the career that I loved and saw myself in for the rest of my life. Ironically I was depressed about the situation I was in, not the fact that my CHD was ultimately the reason.
Fortunately, I was working part time as a chauffeur and decided once the time was right I
would make this my new full-time career. I worked successfully in this career for the next 17
years. Health was good, I felt so very alive. I began specializing in Napa wine tours and was very well versed in wines, the wineries and the history. Soon, I was asked to train other chauffeurs.
This became my life. I would work sometimes long 16 hour shifts, multiple days in a row and
during busy season, never slowing down. It was amazing.
On January 27, 2017, I lost my mother to cirrhosis of the liver due to her alcoholism. Three
weeks later I was hospitalized for what I thought was pneumonia. Instead, I was diagnosed with portal & pulmonary hypertension, cardiac cirrhosis and congestive heart failure. The pulmonary hypertension was not due to pneumonia or a lung disease rather from my cardiac issues.
At that time the doctors felt I may need a transplant and was asked to undergo evaluation at Stanford, 151 miles away, as my case was too complicated for local Sacramento doctors to handle.
In February 2017, I had to end my career again due to my CHD. I filed for and got full disability.
On December 5, 2017 I was placed on the UNOS list for a liver transplant followed up by
listed for the heart on February 23, 2018. I am told I will be the 17th combined heart & liver
transplant Stanford will perform and that after the transplant is completed I will need to relocate to the Stanford area for 3 months while I recover.
On January 27th, 2019 (exactly 2 years from the day of my mothers death) I got “the call”.
It was a Sunday. I was preparing a BBQ for my Aunt, Uncle and cousins. I thought the doctor
was calling to give me information about a right heart Cath I had scheduled in two days. I was in complete disbelief. Crying tears of joy, I immediately called my fiancee at work. Her response was “are you sure?” When my aunt and uncle arrived I told them I had to postpone the BBQ as I had gotten “the call”. They were so excited for me. Their excitement made me realize how much of a big deal it was not just for me, but my family as well. Jen arrived home and we packed the truck and off we were to Stanford. During the 2 1/2 hour drive, we discussed options, finances, plan of actions, and more. It was a perfect, quiet, no distraction conversation we had put off. Timing was everything.
Upon arrival at Stanford (which seemed like a ghost town) we went to the ER, in which we
were directed where to go. After some time, the doctor came in and said “Welcome to transplant life, now begins the wait. We plan on doing the transplant tomorrow at 2PM”
Finally after an 11 hour transplant surgery I have a new heart & liver. Post transplant, I experienced a common problem called ICU delirium. I had many hallucinations during my entire stay in ICU. In part from the new medications, strange environment and trauma to my body from the surgery.
Throughout all the hallucinations one thing was common…the sound of the helicopter (Life
Flight) that would land or take off from the roof directly above ICU. A few days after I was
released, hearing any helicopter took me back to many of the hallucinations. I have discovered talking to people (including a psychiatrist) about this has helped and cleared me of these horrors of the transplant.
I’m the 19th heart & liver transplant Stanford has done (including pediatrics). I am within
the first generation of duel transplants they have performed, which will be used to train for
others. I’m currently recovering and optimistic about my future. I am also aware that just because I’ve had the transplant, I’m not cured of my CHD. In fact, I have only traded one set of problems for another set.
My son works in the world of computers. I currently live with my fiance, Jennifer and her
son Jason just outside Sacramento in Roseville, CA. Jennifer is a strong, passionate supporter of my health and is always willing to be by my side during any doctors appointments or procedures.
Her compassion for people and understanding of the human spirit makes her an amazing
mother, care-giver, fiancee and friend.
I continue to enjoy worshiping my heavenly father, God. I love to travel, bike ride, hike,
spend time with my dogs at the dog park, kayaking, photography/video and just fun in the sun!
My overall passion is giving back to people. I began “Jason’s Heart & Liver Transplant Journey” facebook page as soon as I was diagnosed with needing a transplant in attempt to teach, inspire and dispel myths about the transplant process. I continue on with this mission, rally for organ donation and have begun a ACHD support group in Sacramento. I feel this is my calling in helping others who may be or are going thru the same thing I went thru. I also try to educate parents of CHD and help them to understand what their child is going thru. I am a disaster services volunteer for The American Red Cross and truly love helping others in their time of need. I have been deployed to nearly every major disaster in the United States from Hurricane Katrina to most recently the wildfires in Napa and Sonoma counties. I look forward to serving Jesus Christ as He intends me to. I am excited to be able to get back to continuing helping others thru the American Red Cross, ACHD Support Group, as well as public speaking engagements.