After Mary Vyas’s son is diagnosed with PSC,, she is determined to be a living liver donor.
Mary Vyas is the President and Co-Founder of PSC Partners Seeking a Cure Canada. She recently joined the US affiliate PSC Partners Seeking a Cure staff as the Vice President of Strategic Initiatives. Mary leads the development and execution of key strategies that align with the organization’s long-term goals.As a member of the research team, Mary oversees the patient registry. She represents both PSC Partners and PSC Partners Canada externally, for example at the PSC Forum through the Center for Collaborative Research, as well as at professional conferences across the U.S., Canada, and Europe. Mary is the patient-partner Principal Investigator on a team research grant from the Chan Zuckerberg Initiative aimed at clarifying the cellular mechanisms of pediatric PSC and identifying potential cellular targets for effective therapies. Mary’s commitment to the organization stems from the profound impact PSC has had on her family’s life when her teenager was diagnosed with PSC. Mary and her husband Jay are proud parents of two young adults. They spend their time between their home in Toronto, Canada, and their home away from home in San Francisco, California.
TRANSCRIPT
It is a spring morning. The house is empty and quiet. My two teenage kids have both left for high school, my husband Jay is at work. It's about a week before for spring break and I'm really focused about this spring break trip we're planning. The kids are getting to that age where family trips may soon be a thing of the past.
I'm in my bedroom and I pick up the phone. I'm standing. I'm looking out the window. I notice the trees and the sun on the leaves. The call is from a good friend of mine. She happens to be a pediatric hepatologist.
My 16‑year‑old son, super easygoing kid, a swimmer, fit, energetic, shining with 16‑year‑old health has been having some odd GI problems. His case has landed on my friend's desk, so I'm happy to pick up the phone.
I hear her tell me, “We think he may have something called primary sclerosing cholangitis, or PSC.”
I'm still standing there looking out the window and I'm feeling like, “Well, okay, maybe this is progress.”
I can, in my mind, see exactly what the light looks like on the young spring leaves. You know those moments? I didn't know at the time, but the fact that I remember that moment so clearly, some part of me knew this was a life‑changing moment.
My friend tells me they need to do more tests to know for sure.
It's now about six weeks later. After pokes and scans and biopsies and lots of high‑dose prednisone, after arguments with the doctors when they tell us they don't want him to be more than two hours from the hospital, “Nope, he can't go on his model UN trip that he worked on so hard to go on. Nope, got to cancel that family spring break trip.” After I disbelievingly delivered a letter to the airline from the doctor saying, “It's probably in your interest to refund their tickets because you don't want to have to deal with this kid who might not survive the flight.”
At this point, the words PSC don't really feel like progress anymore, but they feel just kind of like a really weird dream. I just can't connect this to this kid who gets up at 5:00 AM to go running through the streets of Toronto with his team before they jump in the pool for two hours. It just doesn't make any sense that there's something life‑threatening here, especially something that could be life‑threatening in a matter of hours. It really should feel like a nightmare, but it doesn't. It feels like a mistake.
I'm surrounded by support. I have a wonderful husband Jay, we have wonderful doctors. Every test that they have asked for has been made immediately available, but I feel completely disconnected and alone.
We've learned that PSC is a rare liver disease. We've also learned, well, something we already knew but we didn't really think about too much, the liver is well named. You do need a liver to live.
So we're in an exam room, we're at a hospital, which is called Sick Kids, which didn't feel very good. The room is oddly large. I'm sitting next to my husband. I'm feeling really claustrophobic. I've got coats on my lap. I've got a big binder I've been taking notes, and I've been recording every test. We're getting that talk, the talk now that they know. The diagnosis has been confirmed. He has PSC and we're getting the talk about what this means.
What it means is that there's no treatment. They don't know what causes it. They don't know why my son gets it, or anybody else. It doesn't get better. It is progressive and there's really not a very accurate prognosis about when. It could be today, could be tomorrow, could be 20 years that his liver fails.
I feel like I'm on a roller coaster that's just going down. There's no up, but it's still like this alternate reality. I'm sitting there. I'm looking at this man‑sized teenager across this large room sitting on a child‑sized bed exam table. Something is just not right. Seems like just yesterday, we were worried about how much time he was on the computer and whether or not he had put his swim cap where the dog couldn't eat it.
So the doctor starts telling us that there is the life‑saving possibility of transplant. In fact, Toronto has a very big, one of the largest, transplant centers in North America. And in fact, the transplant center in Toronto happens to be a world leader in the living donor liver transplantation.
Wait a minute. What? Living donor? Liver transplant?
Aside from the hope that this has all been a big mistake, it's the first time in this I feel a whisper of hope. Is the roller coaster maybe starting to head up? This mama bear is all in. I have just heard that I have it in me to fix this. I can fix this with my liver. Done. No questions. No decision. Let's go.
I feel like I'm waking up. This is not a new reality. It's just a little detour. Off he goes into the future we planned, with his shiny health and his shiny new liver.
Gently, Dr. Ling brings me back into the alternate reality. Yes, transplant is possible, but not now. It's risky. You have to survive the transplant and then you exchange the disease for needing to be on immunosuppression the rest of your life.
Okay. Not now, but when?
Nobody knows.
I'm feeling whiplashed by the up and down.
So, time goes on. I still cling to this hope that I've got the fix in me. And, of course, I throw myself into learning all about it. I want to be ready to jump.
It's pretty amazing. Did you know that you can take a piece of your liver and it'll grow back in three months, be fully functional. It's kind of like an internal haircut.
I also learned that I have until 60, at least in Toronto. After that, I or my liver will be too old to be a donor.
So, I go on and I'm in this frustrating limbo. Of course, I don't want my son to need a liver transplant, but I also don't want to lose the chance I have to fix this for him.
I throw myself into work. I start a Canadian affiliate of the US‑based PSC partner seeking a cure. I get busy. I learn all about PSC, and the years go by. And as the years go by, the expiration date on my liver as a fix for my beloved firstborn gets closer and closer.
So, while I'm learning all about living donor liver transplantation, I'm also learning all about PSC and liver disease. I learn that living with a sick liver is really hard and that people with PSC die all too often. And that people with other liver disease die all too often, especially in North America. We don't have enough organs for transplant.
At some point in these years, I come to the realization that I will be a donor, regardless of who the recipient is. I don't really remember making a decision, but I know that if I cannot fix this for my son, well, I have to offer it to somebody. I really can't explain why that was such an easy decision to make. Maybe too many people I now love in the PSC world need livers. Maybe it's the amount of loss and pain I'm witness to, being part of the rare disease community. What I do know is that spring break trips and swimming fast now are completely irrelevant.
A few months before my 60th birthday, I submit a form. I check a box on the form that says I would like to be a non‑directed donor, and the transplant center will get to decide who will be the recipient.
A little over 7 months ago, in honor of my 60th birthday and the expiration date on my liver, I wake up early. I get myself to the hospital. I check into the surgical unit. I get the IV. I get on the gurney. I'm waiting in the curtained area with my husband Jay.
A man shows up and says, “We got to go now,” and I go on a gurney sprint, just like a TV show, doors banging, bright lights. Next thing I know, I'm in the OR. It's calm. It's orderly. And I just remember being so thrilled and relieved.
Next thing I know, I'm waking up. I am overjoyed. I am amazed and I am in no pain.
My husband takes a video and I'm just so happy in that video and, again, amazed. I may be a little loopy in the video. I think I say the word ‘amazed’ 10 times, and I also say, “Everybody should do this.”
I don't know who received two‑thirds of my liver. It is, of course, beyond bittersweet that it was not my son. I'm beyond sad that I haven't been able to fix this PSC for him yet, but I'm leaning into gratitude that his original liver is still hanging in there.
I physically am totally fine. I have a beautiful scar. You too can have one. I had a few months of recovery while my liver regrew, taking a break from my PSC work. Mostly, it was just a lot of sleep and staring out the window. Different trees, different year, but the same spring light on the leaves as that day 10 years ago when I first heard the words primary sclerosing cholangitis.