Two Transplants and a Polar Plunge: A Family’s Inspiring PSC Journey
March 1, 2022
Richard Ayuen joined PSC Partners Canada’s Board of Directors in February 2022. Richard talks to Kristian Stephens, a volunteer writer, about why he joined the Board and about his journey as being a caregiver for his son Matthew.
Why did you join the PSC Partners Canada Board?
As a father to someone with primary sclerosing cholangitis (PSC) and seeing how this terrible disease has impacted so many in our PSC community, I want to do everything possible to help in the fight to find a cure or treatment. There are only so many hours in the day and with so much to do, I have joined the Canadian team in the hope I will add some additional horsepower and support while bringing a different perspective to this amazing team. My passion in life is helping others. I bring to the Board more than 25 years of business experience and over a decade of first-hand caregiver experience from supporting our son Matthew.
How did you become a caregiver?
I first noticed Matthew’s jaundice while working out with him at the gym back in January of 2009. Panic set in and after ten months of testing we learned that he was diagnosed with PSC. Getting the diagnosis was bittersweet as on one hand it was good to know what the cause of Matt’s disease was, but on the other hand it was scary to learn it was PSC.
The PSC became very aggressive and within six months of his diagnosis, on May 12, 2010, he was given six months to live, unless he would be lucky enough to get a new liver from a live donor. Hearing those words is a moment in time that will be there with my family and I for eternity. Within a short time nine people came forward to be tested as a potential donor for Matthew, such a humbling experience. On September 7, 2010, Matthew got 71% of my liver, it was a no brainer decision and like my wife, 16 years earlier, I had the chance to give life to our son.
Within days of the transplant, his body started to reject the new organ and set us on a path to what turned out to be a year- long recovery. Albeit short, Matt enjoyed living a normal teenager’s life until January 2012 when the disease became aggressive again. Over the next 18 months, Matt’s health declined quickly and he was put back on the transplant waiting list. Fortunately, Matthew had his second transplant in October of 2013. Today he is chasing his dreams as he is doing well.
What helped you and your family to cope?
From the very start of this journey, we experienced some of the darkest moments that one can ever imagine. There is no doubt that without family, friends and the support and caring from the PSC community this journey would have been much more difficult. But I would also say you cannot sit around feeling sorry for yourself and you need to take ownership and do whatever it takes. We, as a family, and I learned everything we could about PSC and received help from counselors and others in the PSC community that had taken this journey before.
Can you please tell us of your polar plunge that both you and Matt have done?
Matt and I celebrated 10 years from his first transplant and raised awareness of the importance of organ donation by taking a plunge into the cold waters of the Pacific Ocean at White Rock, British Columbia on December 31, 2020. This past year, despite being thousands of miles apart, on December 31, 2021 we both took the plunge in the Pacific Ocean at the same time. I was in B.C. while Matt was in Costa Rica. Needless to say, the water was a little colder for me in B.C.
What would you tell others who are caregivers of someone with PSC?
This journey with PSC is like no other as it is a marathon with episodes of chaos, helplessness, and happiness. Make sure you:
- Get educated about PSC by seeking medical expertise
- Keep the family positive in both body and mind
- Take time and look after yourself
- Just be there
