Two years post liver transplant: what have I learned

by Alice Williams, Volunteer Patient Partner, Wilson disease and organ donation advocate

In December 2022, I had just retired from a 30+ year career in corporate communications and waslookingforwardtoafuturewithgolf,pickleballandtravel classicretirementactivities Our two children (son 23 and daughter 20) were successfully launched My son had finished university and had a good job. My daughter was in her second year university studying economicsanddoingwell.MyhusbandandIcongratulatedourselvesonwhatagreatjobwehad doneraisingourkids.

Then,thewallscavedin.

My daughter came home from university feeling very tired, bloated, nauseous and weak. I thought maybe she has irritable bowel syndrome, burnout from studying for exams, the freshman15weightgain,herappendix,gallbladder?

IthoughtanythingbutWilsondisease.WhywouldI?IhaveneverheardofWilsondisease.

She suffered through the holidays and slept a ridiculous amount The fluid was getting more pronounced in her abdomen, and she started vomiting at random. A visit to our family doctor, who took some blood work and an ultrasound showed fluid in her abdomen and elevated liver enzymes. “Let's monitor and test again in a month,” our doctor advised. I realize now that if we hadwaited,shemightnotbehere.

After the holiday break, my daughter insisted on going back to university to start the winter semester. I suggested she stay home so we could arrange for more tests, but she was eager to getbacktoschool.Shedidagreethatifthesymptomsworsenedordidn’timprove,shewouldgo toemergency.Twodayslater,shedidjustthat.Littledidweknowthatshewasatendstageliver disease. Fast forward a month later and she was back at home in Toronto with her new, transplantedliver.

Two years post liver transplant: what have I learned cont'd Tosaywewereblindsidedisanunderstatement.

Atemergency,doctorsquicklydiagnosedherwithWilsondiseasewithinafewdays.Herliverwas so damaged that it couldn’t be saved. She needed an emergency liver transplant. I will never forget the doctor’s words. “It’s the only lifesaving option at this point.” I was frozen and numb. How could this happen to an otherwise healthy young woman who didn’t do drugs, didn’t drink much,workedoutandatewell?Wewerelucky Mydaughterwasputatthetopoftheprovincial transplant list in Ontario and received her new liver within 10 days of her Wilson disease diagnosis I am forever grateful to her anonymous, deceased donor and their family, who made thedecisionintheirunimaginablegrieftogivebackanddosomethingcompassionate. Theysavedmydaughter'slife.

Shortly after my daughter received her transplant, we had her brother tested, which confirmed thathe,too,hasWilsondisease Hisliverdamageisn’tassevereashissister,andheiscurrently receivingtrientine,whichseemstobeslowlyhelping

As I write this, my daughter just celebrated her two-year anniversary with her new liver. She seems to like it, and it seems to like her. I am enormously proud of how she has navigated the new normal and is living her life as a young woman, now with the knowledge that she had a diseaseherentirelifeandhasatransplantedliver.Ialwaysknewshewasstrong.Ineverrealized thatshewouldbetestedlikethisbutshehasshownmehowstrongshereallyis.

So what have I learned two years later from one of the worst experiences our family has had? I havelearnedthatyoucanfacethethingsyoufearthemost almostlosingyourchildandyour child having a rare disease and come out the other side a little bruised, beaten, worn done andforeverchangedbutstillpositive,joyfulandhopeful.

It hasn’t been easy. I think I have cried enough tears to fill Lake Ontario. As their mom, from the day they were born, my primary job was to keep them safe and healthy. I thought I did all the rightthings dentistandeyeappointments,doctorvisits,vaccines,fruitsandvegetables,swim lessons, etc As much as I tried to nurture them and help them grow into healthy, confident adults, I couldn’t protect them from genetics and the defective gene that their father and I unknowinglygavethem

Two years out, I am thankful and hopeful. The only thing worse than getting bad news if feeling that you are alone. And in the first days and weeks of my daughter’s transplant and my son's diagnosis, I did feel alone very alone. So, I did what most of us do when we are thrown into unchartedwaters.IturnedtoDr.GoogleandsearchedforinformationaboutWilsondisease.

Two years post liver transplant: what have I learned cont'd

That conversation led to countless more. These past two years, I have met people across Canada,theUSandaroundtheworld virtuallyandinperson patients,caregivers,advocates, and physicians. Each has given me knowledge, re During my search, I discovered the Wilson Disease Association and various Facebook support groups. I reached out blindly, hoping someone would message me back and tell me that it’s going to be okay. WDA co-founder and boardmemberCarolTerry(atruepioneerintheWilsondiseasecommunity)wasoneofthefirst people to reach out to me. She was kind, reassuring and very informative. I didn’t feel so despondentandafraid.

Assurance and a sharper perspective on Wilson disease And I have tried to do the same for peopleImeet

Two years later, I have chosen to take my worry, frustration, anxiety and angst and channel it intosomethingmorepositive.Worryingwhethermykidstooktheirmedsoraredrinkingenough waterisn’thelpfultothemtome.ThereismoreIcandoastheirmother.

I have joined the board of Wilson Disease Association (WDA), created a Canada chapter, and joined the board of the Canadian Organization for Rare Disorders (CORD). I volunteer as a PatientPartnerwiththeUniversityHealthNetwork(UHN),acollectionoffourteachinghospitals inToronto,myhometown.

Any chance I get to talk to med students or new physicians about Wilson disease, I grab the opportunity. I am hopeful that they will remember meeting me and the next time they have a challengingdiagnosis,theywillconsiderWilsondisease gIn this vibrant corner of Heal Canada Digital Magazine, we're excited to introduce you to our "Living Well" section – a treasure trove of inspiration and guidance for those seeking a healthier, happier, and more balanced life. Our mission is to empower you with expert insights, the latest health trends, and personal wellness stories that resonate with real-life challenges and triumphs.

The more I learn about Wilson disease, the more hopeful I am It’s treatable, albeit it’s a lifelong treatmentprogram.Clinicaltrialsareunderway.AdoctorwhotreatsWilsondiseasepatients,Dr. Silhoun Hahn, has developed an assay to add Wilson disease in the newborn screening panel. This gives me great hope. If we could diagnose Wilson disease in infants, this could be a game changerandendsomanyyearsofsufferingandanguishforpatientsandtheirfamilies.Ibelieve that in my son’s lifetime, there may be a cure, certainly more and better treatment options for Wilsondisease.

My children and our family are forever changed by my son’s diagnosis and my daughter’s liver transplant. As much as I feel it has closed some doors for them, it has opened so many others, too, for all of us.

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