Volume 2, Issue 3
March 2021
Have Questions about COVID Vaccines and PSC? The Loonie Team is Growing Stories from the PSC Community: I am a Warrior, You are not AloneCrafted by Community: Nova Scotia Makes Bold Changes to Organ Donation Fundraising
Have Questions about COVID Vaccines and PSC? 
To find out more about COVID vaccines from a well-known infectious disease doctor, PSC specialist, and IBD expert, please visit PSC Partners website here to watch the January 19, 2021 webinar.  

The Canadian Liver Foundation and the Canadian Association for the Study of the Liver posted a one hour webinar on the COVID Vaccine Safety for Patients with Liver Disease. This presentation focused on:
  • Why we need COVID vaccines; 
  • The vaccine development and clinical trial process;
  • How COVID-19 vaccines work – all your questions about mRNA (plus a few others) answered
  • Why liver patients should get vaccinated – safety, effectiveness, and risks associated with COVID for liver patients

The Toronto Centre for Liver Disease at University Health Network (UHN) has issued a statement entitled: Information about COVID-19 Vaccines for People Living with Liver Disease Expert Guidance for Patients.

For transplant patients, the University Health Network (UHN) posted a webinar on COVID-19 Vaccines for Transplant Receipts: What you need to know. .
The Loonie Team is Growing!
Jessica & Meg have new team members!
Hello, my fellow PSC community members, please allow me to introduce myself, I am Kristian this year's co-editor, PSC patient since 2004 and liver transplant recipient. I am husband to my better half Jennifer. I am delighted to have been part of the PSC Partners Canada community for the past couple of years which now includes helping to edit the Loon Duct newsletter. You can see my PSC Partners testimonial video that was part of the PFDD in October of 2020 here.
Hi there! I’m so happy to have joined the editorial team for the Loon Duct. You can call me, Jenn or Jennifer, whatever you would like. I have been fortunate to be part of the PSC Partners Canada community for the past two years with my husband, Kristian. As a caregiver, I have seen the bad and ugly of PSC, but also the good associated with a fabulous support system made up of colleagues from the PSC Partners Canada and medical communities. Always happy to lend an ear to listen. Having and supporting a loved one with PSC is a journey in and of itself.
Stories from the PSC Community
'I am a Warrior' - Jessica Travis
Everyone’s journey with PSC is different. A doctor once compared this journey to the path we take in an airport to get to the flight gate. Some walk, some ride the moving sidewalk or the extra fast-moving sidewalk and get there quicker while others end up riding in one of the golf carts and make it to their gate before everyone else. Regardless of how fast your PSC progression is, one thing that we all share in our journey is our ability to face the challenges that PSC throws at us and our ability to fight back.  

I was 21, I had a boyfriend I had been dating for about a year and I was living in an apartment with my best friend, Kailee. Life was simple and my biggest worry in life was studying for my courses and completing my degree in Tourism Management. I remember the day that everything changed. I remember going to the bathroom and looking into the toilet and seeing what looked like red water. Kailee, came with me to the walk-in clinic and I saw a doctor who told me I needed to go to the emergency room. I remember sitting outside of that walk-in clinic and crying while Kailee tried to console me. I had been healthy my whole life and never needed to go to a hospital for anything. This was uncharted territory.  

Over the next few months, I had blood tests, scopes, and doctor visits to figure out what was happening to me. In the end I was diagnosed with Ulcerative Colitis (UC). After about a year of urgency issues and a constant fear of not making it to the bathroom in time, my UC was getting worse. Around this time, my Gastroenterologist (GI) told me I looked pale and sent me to get some bloodwork done (I remember thinking how funny this was… I was a redhead who never went out in the sun without sunscreen, of course I looked pale!). At my next appointment, my labs came back with elevated liver enzymes. As we were talking about the results, he mentioned there is a possibility it could be something (he did not say what it was), but said I’m not showing any other symptoms such as itching, bruising, etc. As he said this, I interrupted him, “actually I have been itchy and had some bruising”. He stopped talking. We repeated the blood tests and then came my PSC diagnosis.  

A year later my UC continued to get worse and eventually I ended up having an emergency colectomy with a temporary ileostomy. This was my first time ever having to be admitted to hospital for any longer than just a few hours and I was on the other side of the country from any family. I did not realize it at the time, but I could have died. Another year later I had my life back! I decided to opt in for having surgery to reconnect my ileum and that surgery was a success.  

Life was good and my PSC symptoms didn’t start to affect my quality of life until my early 30s. I was working full time hours at a job I enjoyed. I had just been promoted to a supervisor position, but I was working rotating grave shifts and for the first time in my life my health was starting to interfere with my work. My doctor told me I wouldn’t be able to maintain working grave shifts for very much longer before it would be coming too taxing on my body, I was starting to suffer from fatigue and my work schedule was making things much worse. I opted to change jobs and in my personal Iife. My husband and I had just bought a house and we were looking at the possibility of having children. We moved into our house in January, I started my new job in April and about a week or two into my new job I ended up in the hospital for an emergency surgery to repair a perforated ulcer. I made it through the surgery and was discharged about a week later. I had escaped death once again! (I was starting to feel like a cat with 9 lives at this point).  
I was only home for a couple of days before my skin colour and my fatigue sent me back to the hospital. My skin was so yellow that I looked like one of the Simpsons! I also did not have enough energy to stand in a shower and wash my own hair. The transplant team had been called and I was then placed at the top of the transplant list. Then something happened… my labs started to get better. I do not know how or why, but my liver managed to dig itself out of a deep hole and eventually my labs were back to the way they were before my ulcer. 

After my last surgery, my labs were back to “normal” but it took a toll on my body. My fatigue was now a constant struggle, but it was one I could manage. Over the last seven years my fatigue continues to get worse and it now affects my day-to-day life. I must watch my salt intake and wear compression socks almost every day now. I also have frequent bouts of nausea, headaches, and the itching (which I used to experience only once in a blue moon) is starting to become a challenge. On paper, my labs are not great, but my MELD does not even put me on the transplant list, yet I’m walking a fine line between compensated and decompensated liver cirrhosis. A transplant is on the horizon, we are just not sure if it will be in the next year or the next five years, but it’s something I have to start planning for.  
It’s such a strange thing, being a kid who almost never got sick to becoming a young adult who was diagnosed with two non-curable diseases, to now, not even middle-aged, yet planning for a liver transplant. PSC had taken away my ability to really go after what I really wanted in a career, my possibility of ever having children, and my reliability to follow through with plans I make with friends and family. At the same time, I have learned at a young age that I am stronger than I ever thought I was. I have learned to appreciate the things I have, and not to take the days I have for granted. I have also learned to roll with the punches, to try to listen to what my body tells me, and not to sweat the small stuff. Life is hard, life with PSC is harder, but I have met some amazing warriors along the way, and I am one of them.  

You are not Alone
-Jennifer Stephens
For far too long our mental health has come secondary to our physical health; the premise in the past has always been that what is on the outside is much easier to fix than what is on the inside, right? The mindset that what you are thinking, and feeling is supposed to be kept private hasn’t helped either. Our physical and mental health are closely tied together, and that has never been more apparent than over the past 12 months.

As a chronic disease, PSC already puts patients at the risk of depression and anxiety but add to the mix the Novel Coronavirus (COVID-19), and the mixture becomes even more stressful. As the COVID-19 pandemic continues, so does the need to employ practices that will decrease the transmission of the virus, such as physical distancing and lockdown protocols. Although these measures have proven success in lowering the probability of exposure to COVID-19, they result in isolation and loneliness. Now more than ever as a PSC patient, or as a caregiver, it is critical to establish self-care practices to maintain mental health and wellness.

One of the most effective ways to ensure self-care is incorporated into your daily routine is to plan for it. Establish some structure to your day so that you feel like you have had a successful day. This structure can include putting aside blocks of time for specific activities. For example, you might want to consider starting a new hobby or project; alternatively, you may just want to reminisce through scrapbooks and photo albums.

On February 22, 2021, the Toronto Star published an article announcing that Ontario health-care providers can soon offer prescriptions for nature. The article references the Parks Prescriptions Program which makes nature part of your treatment plan. As Canadians, we are fortunate to have the beauty of our natural environment in our own backyards. Over the past several months, the benefits of getting outdoors for a stroll in the park, taking a bike ride, or even just to sit and breathe in the fresh air, have been communicated through several channels. If you have not incorporated getting outdoors into your daily routine, check it out, I guarantee you will not be disappointed.
With the ability to always be accessible through your computer, cellular phone, or even television, the Centre for Interpersonal Communication recommends using technology to allow you to be socially healthy. Tune into exercise classes remotely, or even book clubs, set up times to chat with groups of friends and family. With COVID-19 being a global pandemic, almost every organization and application have all been looking at methods to offer their programs and services virtually. You can even travel to Europe and Australia with your best friend without leaving your living room!

For me, one of the most important aspects of my mental health and wellness program is my support system. My family, friends and co-workers all have an integral role in this network. Talking about the way I feel on a particular day may change the way I feel, it may not, but at least I know that I am not alone. PSC Partners is part of your support system, your family, your medical team, and even the Government of Canada.

Remember that whether your mood is being impacted by PSC, or COVID, we are #InThisTogether.  

Crafted by Community
Highlighting members of the Canadian PSC community

Nova Scotia Makes Bold Changes to Organ Donation
-Virve Aljas
Nova Scotia recently became the first province—and the first jurisdiction in North America—to adopt a "deemed consent" system for its organ and tissue donation process. This was accomplished when the province enacted its Human Organ and Tissue Donation Act which came into effect in January of this year.

This is a bold change that will impact the lives of many people waiting for life saving and life changing transplants.
Before going further into this legislation, it is important to recognize that changes to policies and practices like this happen because of the tireless dedication of advocates. In this case, the story of one donor consent advocate in Nova Scotia hits particularly close to home. Jessica Tighe was a PSC patient from Cape Breton and became an organ donation advocate after receiving a transplant in 2011. The celebration of this change is bittersweet, as Jessica died shortly before the legislation took effect. Not only did she devote time to changing the approach to organ donation, but she also raised awareness about PSC. Jessica was just 30 years old, but she will be remembered for an impactful legacy she left behind.
What is Deemed Consent?
Many organ donation registries rely on people voluntarily granting consent to register as organ donors after death. Deemed consent (or presumed consent) takes the opposite approach, where people who do not register to be a donor or specifically opt out and are eligible will be seen as having consented to donating their organs and tissues after death.
According to Dr. Stephen Beed, medical director of the Nova Scotia Organ and Tissue Donation Program, people who inform their families that they do not want to be organ donors will be respected even if they have not opted out. Others are also exempt, including people who do not have capacity to make their own decisions or newcomers who may not yet have a clear understanding of the system. Click here for more information on the Human Organ and Tissue Donation Act.

Even in programs where people voluntarily register as organ donors, the next of kin can often have the final say on the donation. This is why it is crucial to have the sometimes-difficult conversations about your end-of-life decisions with your loved ones. Speak Up Canada has helpful ideas on how to start the conversation here.

Organ Donations Across Canada
Regions across Canada are following Nova Scotia to see how the program moves forward. A few other provinces have broached the subject of presumed consent in the past. In 2017, a private bill was put forward in Manitoba that was meant to enact presumed consent. The government voted against the bill, saying the province preferred to keep their system as-is, and to promote voluntary registration through education campaigns. The Saskatchewan government discussed presumed consent in 2016, but the initiative did not move forward. They decided that an online registry was a necessary first step, and their registry launched in September 2020.

If you are interested in learning more about legislation in your area, please contact your local government representative (MPP, MNA, MLA). 

For regional information on how to register as a donor, visit the Canadian Blood Services website and select your area.

Opportunities for advocacy around this issue will be communicated on PSC Partners Canada social media.
PSC Partners Canada has partnered with the Canadian Liver Meeting 2021 #CLM21!

We are excited to be a part of this unique opportunity to exchange ideas, promote collaboration, & foster knowledge translation among researchers, healthcare practitioners, & community-based groups with an interest in #liverdisease. PSC Partners Canada presents an annual PSC Partners Canada CASL award to the best abstract on PSC at the Canadian Liver Meeting.

Registration for patients and community members is just $25. This professional association event is geared towards clinicians and researchers, and patients are welcome.

Check out the full schedule here.

The 4th Annual Canadian Liver Meeting is a collaborative effort of the;
  • Canadian Association for the Study of the Liver (CASL),
  • Canadian Network on Hepatitis C (CANHEPC) and
  • Canadian Association of Hepatology Nurses (CAHN)
  • American Association for the Study of Liver Diseases (AASLD)

We are currently in the planning stages of an online auction to be held later this year 
and we need your help!

We are looking for people who would like to help us find auction items. The more people the better. No expertise is required! You only need to have a desire to help fund research to find a cure for PSC.

Please contact Sandy VanOstrand for more information and to get involved. sandravanostrand@gmail.com 

Together, we will find effective treatments and a cure for PSC.
Cancellation of the 2021 PSC Partners Conference
It is with heavy hearts that PSC Partners has had to reschedule the 2021 PSC Partners Seeking a Cure Patient and Caregiver Conference. Out of concern for our patient community and uncertainty about the course of the COVID-19 pandemic, the PSC Partners Board of Directors voted to postpone the conference until 2022.

The 2022 conference will be held in Boston, MA, in collaboration with Dr. Josh Korzenik, Brigham and Women's Hospital, and Dr. Dan Pratt, Massachusetts General Hospital. The exact date will be announced soon
With the knowledge that in-person gatherings are vital for our community, we eagerly anticipate the time when we can be together, again. We have lots of virtual opportunities planned to keep us connected in 2021. Read below for ways to stay in contact with others in the PSC community and to continue learning about PSC.

More info coming in the March issue of The Duct
The Duct is the monthly newsletter from the US-based PSC Partners Seeking a Cure.

PSC Partners Mentor Program for
Peer-to-Peer Connections #InThisTogether

The PSC Partners Mentor Program provides much-needed support for people whose lives have been impacted by primary sclerosing cholangitis (PSC). Whether you’re a PSC patient, a parent, spouse, or caregiver of someone with PSC or are carrying on the spirit for a PSC patient who has passed, the PSC Partners Mentor Program is for you!
Volunteer to be a Mentor
Currently, PSC Partners is recruiting mentors for this volunteer-run program that is vital to our community. Won't you help? If you have attended at least one PSC Partners Conference and want to give back to the community by becoming a mentor, please send an email to contactus@pscpartners.org. Put "mentor program" in the subject line. We are seeking Canadians! Thank you!

We will be placing Mentees with Mentors soon
PSC Partners is in the process of refining the mentor/mentee matching process for the Mentor Program. In the meantime, please watch this video to hear a PSC patient talk about how important the PSC Partners Mentor Program has been for him.
Upcoming PSC Related Events:  

PSC Partners’ ZoomRoom meetings are a great way for Peer-to-Peer Connections! You're Not Alone Zone!
  • Tuesday, April 13 at 6 p.m. MT (8pm EST): ZoomRoom for Caregivers / Spouses / Parents: Register Here

  • Wednesday, April 28 at 6 p.m. MT (8pm EST): ZoomRoom for PSC Teens, ages 13-20: Register Here

  • Tuesday, May 1 at 6.p. MT (8pm EST): ZoomRoom for PSC Patients, ages 18 and up: Register Here
PSC ZoomRooms are a chance to connect with your peer groups and ask questions. Join and laugh, cry, and connect with old and new friends. ZoomRooms are open to the intended audience only to allow for open communication and relationship building. Advance registration is required.

Please visit the events page on the PSC Partners website for all scheduled ZoomRooms and other events of interest to our community. 

Have you checked out the webinar series from 2020?
PSC Partners Seeking a Cure offered a series of webinars to ensure our community stays informed about issues of importance. Please see link below to past presentations.
A New Patient Registry Newsletter!
The PSC Partners Patient Registry has launched a Registry Newsletter to bring news from your registry! If you are a Registry participant, check your inbox. The inaugural issue was e-mailed on Friday March 12.

To elect to receive direct communications from the Registry on clinical trials and other information about how the Registry is supporting research, please join the Registry!

PSC Partners Canada uses Facebook regularly to share news of interest to the Canadian PSC community. If you are not a Facebook user, the feed of postings is shared to a page on our website at pscpartners.ca. The Loon Duct is sent quarterly, so if you are wishing for more frequent contact, remember to follow us on Facebook, or check in periodically on the website.

Our mission is to provide education and support to PSC patients, families and caregivers and to raise funds to research causes, treatments and potential cures for primary sclerosing cholangitis.

PSC Partners Seeking a Cure Canada
A Canadian registered charity affiliated with
PSC Partners Seeking a Cure