Some of you may already know, today I embark on my most testing journey ever taken, the process of getting placed on the USA organ transplant list– I need a liver. I was Diagnosed with PBC an incurable and progressive invisible illness (an autoimmune disease, which is defined as the immune system attacking itself). I never drank a day in my life.
On this first step, I am scheduled Monday-Friday all next week of medical testing (vampires) to determine my current MELD score. MELD stands for “Model for End-Stage Liver Disease.” MELD scores range from 6 (less ill) to 40 (gravely ill). MELD scores predicts the three month mortality rate in patients with advanced liver disease and signifies how urgently a patient like me, needs a liver transplant. From attending two liver conferences with Europe’s TOP liver GURU’s I do know for fact past 29 all other organs start failing so in Europe it is preferred to transplant before this high to avoid rejection of new liver. These are the days I wish Hugh Laurie “Dr House” would see me instead of my own Hep!
Aside from MN Mayo’s world renown Liver Transplant Team, we also must meet with accounting and Psych Dept. You may not need to wonder why.
PBC has been my only unwilling and unpredictable journey I was forced to take in life, but I guess we all have a life to live and many of us a heavy cross to carry. I can count myself lucky, because for now I’m still alive, I guess more than anything I grieve the life I used to enjoy. All I want to say to all of you is: Never take for granted your health. Take EACH and every opportunity to live your life and love to the fullest. Smile emoticon.
PS – I am in need of a new liver or a small portion of someone’s liver (LIVE donor), I am blood group O. Extremely grateful if my family and friends would please share my story, you just never know who would have a burning desire to become a super Hero and save a life?
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