Maria’s Guest Blog – Aug 16 2023
Hi everyone, my name is Maria. I live in Brampton, Ontario, am 53 years old, married for almost 18 years and have a 14 year old son. I have been a Registered Nurse for the last 30 years, working primarily in chronic disease prevention within public health as a middle manager. Never did I think that I would be personally dealing with a life-altering disease such as PBC.
After removing my gallbladder in 2017, my liver enzymes remained high. Two years later, a fibroscan revealed stage 1-2 fibrosis of the liver. My symptoms were fatigue, low appetite, weight loss and gastro upset; later developing esophageal and rectal varices and ascites. I tried to manage my diet with no to low sodium, high protein and was on diuretics.
In 2020, I was at stage 4 decompensated end-stage liver disease with cirrhosis, had a MELD score of 9-12, extreme fatigue, severe ascites and hepatic encephalopathy, and was subsequently referred to the UHN Ajmera Transplant Program at Toronto General Hospital for a liver transplant evaluation.
In January 2021, 2 weeks after the referral, I started the assessment phase. This included blood tests, ECG, pulmonary function testing and abdominal ultrasound- nothing too invasive or difficult. Because it was during COVID, I was able to meet the transplant team virtually- I met social work, anesthesiology, pre-transplant nurse coordinator and several transplant doctors. Everyone was so kind, patient and answered my many questions.
It seemed forever, but 2 months later, I was approved for the deceased liver donor list! I was really scared as it was now reality and was waiting for ‘the call’. During the waiting period, my status was monitored and my MELD score continued to increase. I was suggested to consider a living donor to get a new liver quicker. Family wasn’t a match, so I launched a social media campaign. I was blessed with 6 potential donors who each submitted an 11 page application to the UHN Centre for Living Organ Donation and by June, a close friend of mine had gone through her own assessment phase and was approved to donate her liver to me! I received my miracle at the end of August 2021 and am very grateful for the excellent care we both received from UHN. I am now a patient partner on the UHN Centre for Living Organ Donation Advisory committee and give back in any way I can to help increase awareness of living organ donation.