A personal note about this story. Shelley Walker Myers is a heroine, and her journey through life is both cautionary and inspirational. As patient advocates, we deal with thousands of people who face the future in many different ways, but liver disease is hard because it is not managed well by the medical profession or society in a larger sense. Patients often fight battles that in hindsight they should not have had to and we so admire the human spirit that we often see coping with very difficult life journeys.
My story is long and complicated. In 2009 I went in for a gall bladder surgery and woke up to a team of liver doctors telling me in fact nothing was wrong with my gall bladder but I actually had end stage cirrhosis of the liver and was terminally ill! My meld at this time was 28! It started with my first doctor telling me until I lost the weight I had gained, not realizing why I was so sick, I could not meet with a transplant team! Long story short I lost enough to meet with them and the doctor told me in 2012 “Go home and live out the next five years the best you can”! I was told fatty liver was the cause of my disease.
When I was sent home to die by my first doctor I gave up on myself for awhile and stopped taking all of my meds even the mental health meds I am on for bipolar disorder! I just didn’t want to prolong the inevitable of dying! Well, HE and its fogginess and my bipolar/depression took over my life and all rationality was out the door! I was around the wrong type of people and ended up facing jail. That’s when I woke up and realized my life was still worth fighting for! Looking back now I feel like it was God stepping in and telling me He was not done with me yet!
My first doctor did nothing to truly help me! I had no idea about my disease or the things I needed to know! After talking to another patient, who I didn't even know, who was also going through it I realized I needed to do the research myself!
My everyday struggles include eating, deteriorating muscle n bone and joint pain with osteoporosis! I stay fatigued and tired all the time! My bones are so brittle last summer I broke my left ankle n right foot at the same time by Just standing up to walk! I was getting taps every 5 days draining 10 liters at a time! I gave up! I was dying and accepted it! Until some stranger in my small town shared his story of liver transplant at a different hospital! I got in contact with them and found my life saver! My new hospital has stopped me from having to be drained and found that I have an actual liver disease causing my cirrhosis which is PBC! I’ve only learned of my PBC as of 8-9 months ago so I’m still learning a lot there! My last appointment my meld is a 9 right now! My new doctor said my meld no way matches where my body and symptoms are but most PBC patients don’t! At my sickest I weighed 405 and I am now 195.
When I look back at my experience it seems clear to me that had I been properly diagnosed and educated back in 2009, my life could have gone much differently. I am telling my story to hopefully let someone else know that they have to become their own advocate. I don't know why disease like mine is so difficult to diagnose but don't just give up like I did.
A NOTE FROM ADMIN: If you are interested here is a link to what the medical professionals think about diagnosis.
