My amazing Dad died, I found out I had this rare Autoimmune Liver Disease called PSC, got divorced, sold our house and bought a new home for Aidan and I. With all that going on I put my new rare disease on the back burner…after all I was ‘well’ and diagnosed on a fluke chance �. Three months later I was in and out of hospital, so sick sometimes that those memories are kind of foggy, with over 6+ weeks of daily IV antibiotics for several liver abscesses. After 4 months of health struggles, and lots of help, I finally pulled through, tried to live as healthy as possible and crossed my fingers! With hopes of a slow progression of this new-to-me PSC I carried on with life � … but life and lemons teach lessons…
And now I need a Liver Transplant. https://www.uhn.ca/Transplant/Living_Donor_Program/Pages/living_liver_donor.aspx �
What is PSC? Primary Sclerosing Cholangitis is a rare autoimmune disease that destroys the bile ducts inside and outside of the liver. This causes the liver to slowly die. No one can live without a liver. The damage and scarring inside my liver causes a build up of waste toxins and reduces my body’s ability to get the nutrients I need. Slowly it’s affecting my blood’s ability to stop bleeding properly, to process protein and nutrients and eventually could affect my kidneys as the toxins build up. I get blockages where my liver can’t drain, which causes infections in my liver with severe pain, fevers, nausea and even more toxins building up causing high-risk infections. Last year I was hospitalized at the QEH in Charlottetown twice, with several other procedures, tons of bloodwork and several other tests including MRIs and CTs over the course of 2020. The QEH staff have saved my life and I am forever grateful for the wonderful care they have given me! This PSC liver disease is not my fault, I did not cause it and it is not understood if it is genetic, a result of viral attack or environmental, but most likely a combination! My immune system is destroying my liver, instead of keeping me healthy. There is no effective treatment, and as a rare disease, not a lot of research being done (though more in recent years)�! In 2018 my PSC really started knocking me down again, this time with Ulcerative Colitis on its side. In 2020 I was listed on the deceased donor transplant list at the QE11 in Halifax (in the middle of the pandemic) because I had been so sick so many times that they knew my liver was failing. It’s not a list you want to be on, it means they think you are sick enough to need a new organ but healthy enough to be worth the precious gift and to survive the several hours long surgery and months long recovery! It’s also not a list where it’s first come, first serve. This list is like a lineup at the Bank with 4 different lines to see one teller. And she keeps switching windows!! Until the phone rings saying you have a chance at a new liver you have no idea where you are in line! I’m now one of those people who carries their phone everywhere and looks at it often, day and night waiting for it to ring…. �� I’ve lost the battle against PSC and my liver is dying. What’s kept me healthy-ish before isn’t working anymore. And that’s why I’m sharing all this today � I need HELP... this is ‘The Big Ask’.
�There is nothing close to a cure for PSC, except a Liver Transplant from either a deceased donor or a Live Donor�
I’m getting sicker…and while waiting for Halifax’s deceased donor liver I could get too sick to survive Transplant surgery and recovery! Halifax (QE11) only does deceased donor liver transplants so it was recommended I have my case reviewed by the Toronto University Health Network Liver Transplant Program. It’s the largest Liver Transplant program in Canada and the closest to PEI. I’m now on their list too! It’s a Living Donor list I’m on, BUT it’s a “Bring Your Own Donor” list. Patients who receive a living donor transplant often do extremely well with their life saving liver. A part of the liver is carefully removed from an �amazing living donor� and the liver then regrows quickly in both the recipient and donor in 2-5 months on average!! It's amazing!! I talked to my PEI gastroenterologist a couple weeks ago about the risks of waiting for a deceased donor liver versus asking for a live, healthy donor. He said “You need a new liver. Period. Take the first one that’s offered. Just do the Ask. You need it. You’re worth it.” When I asked the transplant Surgeon in Toronto of the risks of waiting for a deceased donor liver he said “up to 20% of our listed patients waiting for a deceased donor liver die while waiting” � As a ‘bright side’ kind of person I don’t like to think of that. But in quiet moments my mind goes there. And it’s scary. Lately the fears are more real, the tears fall easier. I’m more tired, weaker and more uncomfortable. With the build up of toxins my skin is more yellow than pink. Everyday there’s pain or severe itching or nausea or something. I’ve made major career changes to be able to handle this new reality and my future recovery. I’m not giving up…but I do need help. I was told by a close friend that I need to learn to open up, share more and ask for help when I need it. So here I am… learning a new skill called ‘Asking For Help’. I’m scared to ask and I’m scared to NOT ask. Phil, Aidan and now Adler NEED me to ask. When I think about what I’m asking someone to do for me, the tears tumble out � I’m asking for someone to volunteer to share part of their liver with me. I need it. We need it. And my choices are narrowing and my risks are getting scarier. And there’s lots to do and see yet � �� in life…I just need a Liver 2.0 first. So here’s ‘The Big Ask’: please consider donating part of your liver…it’s life saving � and I need your help. Please share my Big Ask far and wide. It’s not gossiping, it’s helping!! �
�If you know anyone who would be willing to donate part of their liver please check out this link https://www.uhn.ca/Transplant/Living_Donor_Program �. It’s completely anonymous unless you chose to share, there’s a good amount of funding available from the PEI government for any donor no matter where they live (~$5000) to help cover costs/lost income and your liver is mostly grown back in 3-5 months! Criteria: ages 16-60, Type 0+ or 0-blood (to donate for me) and deemed healthy by the Toronto team. It can take up to ~2 months to get all the tests scheduled/done (Health history, bloodwork, CT and MRI usually all done on PEI). There’s a health history form on the link and a phone number to ask about the process. You are usually back home on PEI (or where you live) within 8-14 days after surgery. Thank you for thinking about it. Please share with anyone, anytime�
If you have questions please PM me or Phil and ASK!! We’ll do our best to answer them. You can contact the Living Donor program at UHN Toronto to ask them direct questions too, especially ones you don’t want to ask me. We get it, it could get weird �
Thank you for reading right to the bottom � Just for that alone we appreciate you ��
To register to donate your organs once you don’t need them anymore (and someone else really, really does) go here:
https://www.princeedwardisland.ca/en/service/register-organ-andor-tissue-donor �
To find out more about PSC go here:
https://youtu.be/xEadEPW8Prg (video)
Or here: https://pscpartners.org/about/the-disease/basic-facts.html �
