Living with liver disease

Its good to see something like this done because it is really the only way to get the message out there. In 2012 I began what I thought was my monthly period but it turned into 45 days of extremely heavy bleeding that wouldnt stop. I seen a doctor who gave me a prescription to stop the bleeding and it did but for only a very short time and then it started again. I felt very weak, fatigued, no appetite and could hardly lift my head off the pillow. Back to doctor and was asked to do blood work and within two hours I was called and told to get to emergency asap as my hemoglobin was critical and I required transfusions. More testing later I was told I tested positive for Hep C. I was referred to a specialist in Hepatology and further tests were showing an enlarged spleen, liver and then the day came that he said I had cirrhosis of liver and was already in the advanced stages. suspecting I have had the virus in me for at least 20 years already for the damage that was already done. I was in shock because how could this not have been found before that.
Things have become increasingly worse since then, I have ascities now that is in my stomach and have had to be tapped weekly in the past year, I have had my varicies burst in my throat and chest and they have been banded and glued that they cannot even do anymore of those, I have portal hypertension which is too much pressure in the portal vein and was going in to have the shunt put in only to be cancelled when they discovered a clot in portal vein as well as glue from the varicies repaired that manifested itself into the portal vein as well. Recently I was hospitalized for SBP which is a serious infection from the ascities fluid and am now taking medication for life so that doesnt come back. I know I am only one of many that suffer day after day just to feel well and it is stressful waiting day after day while your name sits on a list. I am 49 years old, have five kids with two that still live at home with me and are dependent on me still to provide for them.
I know all about the MELD score and I understand it as a way of being fair to everyone but that score is based on a blood test of creatine,bilirubin, lytes and platlets and this is how your score is given and it can change from every blood test but the higher the number the more priority you become and low numbers wait. If you are told you look good and are not yellow or bed ridden yet then your ok, but why should one be to that point and on death bed when your chances are slimmer of coming through then.
I would like to see the word get out there more to the public on donation. I know it is not something people want to think about or talk about but it is an important decision to make and can make the world of difference in more ways than they know. I would also like to see mandatory testing done for HepC because it has become so common amongst the population now and until they can discover a cure or at least an immunization for it then its only going to get worse instead of better.
Leanne, Edmonton