"I'm supporting efforts to find treatments and a cure for PSC because, well, it can be brutal. It literally breaks my heart that anyone has to live with a disease like PSC, and I want to do whatever I can to keep funding research and patient programs to make life with PSC a bit easier until there is a cure." - Jason Sparks, post-transplant PSC patient and top fundraiser for the 2022 WALK83.01 for PSC event
Hi, Jason! Tell us a little bit about yourself:
Originally from the East Coast, I have now lived in San Francisco for the last nine years. I attended the School of Foreign Service at Georgetown University and graduated with a degree in International Politics. After considering a career in public service, I have opted to stay in the private sector, and I have worked primarily in various consulting capacities, both for large companies and also on my own. I am now in the process of transitioning to serving as a life coach for men and to leading groups of men through powerful, transformational events in nature. I'm passionate about hiking and backpacking, travel, personal/spiritual growth, and the wonderful rescue dog I adopted in August 2020.
Share your health journey, including PSC diagnosis and impact of PSC on your life:
I am unfortunately one of the lucky ones to have what I call the trifecta: ulcerative colitis, autoimmune hepatitis, and PSC. I was diagnosed with UC during my freshman year in college (January 1999), autoimmune hepatitis during a pretty severe six-month flare of my colitis (March 2007), and PSC roughly five years later (2011-2012).
I have now been managing chronic diseases for more than 24 years, and it's been really difficult at times, both emotionally and physically. Over the years, I met very few people who were also immunocompromised, and it was challenging at times to share about my experience with someone who "gets it." It was very lonely at times.
Since I've been sick to varying degrees for so long, I actually don't know how I should feel as a healthy 42-year-old man. Aside from my UC flare in 2006-2007, my diseases didn't really start impacting my daily life until 2021. In hindsight, I had dealt with pretty persistent fatigue and some jaundice in my eyes, but I otherwise didn't have any major symptoms or side effects that impacted my life. Sure, my LFTs and bilirubin were elevated for years, but I was still mobile and able to do what I wanted.
However, things started to change in June 2021, when I was hospitalized as a result of an episode of cholangitis. And things picked up steam from there: Between June 2021 and November 2022, I spent 24 nights in the hospital across six different visits. These were for two episodes of cholangitis, one following an ERCP that went awry, one to remove my gallbladder (to preempt any potential gallbladder cancer), one to address some internal bleeding, and one for my liver transplant. And with those visits and other tests in the intervening times, we discovered varices in my esophagus, a clot in my portal vein, and increasing fibrosis. I had a cancer scare in May 2022 that (thank God) ultimately wound up being benign, and that -- with the trends we were seeing in my hospitalizations and other lab work -- led to me being listed on June 8, 2022. I started to develop early indicators of hepatic encephalopathy in September/October 2022, and I was prescribed medication for it, but it became a moot point, because I had my transplant the week the script was filled. I never experienced any severe itching, jaundice, or swelling in my abdomen or legs.
Please share your liver transplant story:
Wow, where and how do I begin? The conditions surrounding my journey to transplant five months ago are still pretty surreal to me, but here goes...
As a result of my hospitalizations over the preceding 12 months, my labs, the state of fibrosis in my liver, and my cancer scare, I was listed for transplant at UCSF on June 8, 2022. At the time, my MELD score was in the low double digits, but it was becoming increasingly clear to my care teams that I would eventually need a transplant, and I was listed quite early. California is tragically one of the states where there are not enough livers to go to everyone who needs one, so my doctors advised me to look for a living donor.
Looking back, and I was aware of it at the time, I put off sending an email to friends and family for about four months because I was scared: I was terrified that nobody would come forward and volunteer, or that those individuals who did come forward would not be a match. I avoided sending that email so that I could delay any possible bad news. But three to four months later, I started working on a lengthy email and FAQ document about my conditions, the procedure, and recovery, and, on October 15, 2022, I sent the email to approximately 300 friends and family members. I basically took the approach that I needed as many people as possible to see it, so I emailed people from different phases of my life: college classmates, former coworkers, etc..., even if I hadn't spoken with them in several years.
Immediately after sending my email, and even before I sent the living donor solicitation, several friends initiated the process to be evaluated up to begin the screening process. I was -- and still am! -- so touched by and grateful for the people who stepped forward to be considered as a living donor, but it very quickly became a moot point.
On Friday, October 28, 2022, everything changed. It was a relatively quiet and easeful day, and I took my dog to the Presidio for a walk that afternoon. I was pretty tired from some recent travel and decided to rest a bit that day. At around 6:15 p.m., my cell phone rang, and it was a phone number I didn't recognize. I nevertheless answered the phone and heard the voice on the other end say, "Jason? This is John Roberts from UCSF. How are you?" I honestly thought it was spam at first and that perhaps someone had hacked my medical record, but it very quickly became clear that this was, "the call." He told me that a 38-year-old man in Sacramento was transitioning, and his family wanted to direct their dying son's liver to me. I couldn't believe what I was hearing, and Dr Roberts was quite curious about everything himself. He asked if I knew anyone in Sacramento, and I replied, "Dr Roberts, I've never even been to Sacramento. I know NOBODY there!" While directed organ transplantation is clearly an option, Dr. Roberts shared that he had never, in his entire career, heard of a directed transplant from someone who was not known to the recipient.
After walking me through things, he told me that I had an hour to decide if I wanted to accept the offer. I was in such a state of shock that I told him I needed some time to think and process things -- this was so unexpected!! -- and talk to some people and that I would call him back.
Long story short, I accepted the offer, went to the hospital two hours later and began a night of testing. And 18 hours after receiving his phone call, my transplant began, and I woke up six hours later in the ICU. I had a liver transplant on October 29, 2022, exactly two weeks -- TWO WEEKS TO THE DAY!! -- after I sent my living donor email.
There are still a number of details that I would like to fill in, but as best as I've been able to piece together, my donor's family sent an email to a group of people saying that they would like to donate their family member's organs and to spread the word. This is where it gets a little convoluted, but after several rounds of forwarded emails, that message apparently went to someone who works in the same office as the sister of one of my friends who received my living donor email. (I still haven't figured out an easy way to explain this.) What's insane is that my friend's sister started working in that office only one month earlier, and there are so many moments along the way where this could have broken down: if she hadn't started working in that office, if someone was on vacation and not checking emails on a Friday afternoon/evening and missed the donor family's email, if my friend didn't tell his sister about my need, etc... I haven't written to my donor family yet but plan to do so in the next couple of months.
I found all of this out when I sent an update to everyone on my living donor email list telling them that I had my surgery and that I no longer needed a living donor. My friend -- who I hadn't talked to since March 2020 -- called me and said, "So, I've been curious to hear from you, because I think I know how you got your new liver..."
WILD.
Since then, I've been very curious about the whole process and have been trying to wrap my head around the fact that I had a transplant, that it happened, how and how quickly it happened, etc...
How did you learn about PSC Partners, and why are you supporting our efforts to find treatments and a cure?
I learned about PSC Partners through a friend, Lisa LaCroix, who did some work with the organization a few years earlier. I met Lisa in July 2021, and, in the course of talking about things, I shared that I had two liver diseases, one of which was quite rare and had a long, complicated name. She asked what it was called, and I was shocked when she said she had heard of it and that she knows several people with PSC. I asked how and she told me about her work with PSC Partners. Lisa immediately became the first person outside of a hospital or doctor's office that I had ever met that had heard of PSC. She introduced me to Ricky, as well as Jessica Travis (who had her transplant about five weeks after me!), and that started my involvement with the organization.
I'm supporting efforts to find treatments and a cure for PSC because, well, it can be brutal. It literally breaks my heart that anyone has to live with a disease like PSC, and I want to do whatever I can to keep funding research and patient programs to make life with PSC a bit easier until there is a cure.
Please share a bit about the fundraising strategy that helped you become our number one fundraiser for last year’s WALK83.01 for PSC:
I have been active in various fundraisers going back to third grade, and I have always been very competitive about them. Here are a few points that have been successful for me:
- Ask! I know asking for help can be scary, but people have kind, generous hearts, and, in my experience, they want to help.
- When you make the request for a donation, tie it to your experience and make it personal, whether you're a patient or a caregiver
- Get creative (and liberal!) with the donation amounts you suggest. In the past, I've suggested $5 for each pill I take per week, or $100 for each hospitalization I've had, etc...
- Be shameless -- SHAMELESS! -- about following up with your donors. I generally start fundraising several months in advance, send some updates along the way, and then, as the deadline approaches, I'll start texting (harassing?) people individually.
What would you say to someone who is hesitant or nervous to get involved in this unique fundraiser?
I would say the following: Regardless of your connection to PSC -- whether you're a patient, caregiver, or have a friend or family member with this disease -- every dollar helps. In my experience, people want to help and are eager to make a donation, regardless of the size. I also look at it this way: you'll likely never know, but perhaps some of the money you raise will go into the research trial that leads to a cure for this extremely rare disease. How great would that feel?
