I’ve been battling liver disease since 1992, at least that’s when I became aware I had a problem. To be fair, I had a lot of problems in 1992, usually making spectacularly bad life choices at every turn. However, this disease (Primary Sclerosing Cholangitis) was the piece de la resistance!
For the newbies, PSC is an autoimmune disease whereby your own body attacks the bile ducts within your liver, destroying them. The disease always leads to organ failure and there is no cure nor medications available to stop the disease. The only cure is a transplant. Fortunately, it’s a slow moving disease, hence this post in 2017.
It would be fair to say PSC is my arch-enemy. But like all enemies, I’ve learned a lot about myself from it and it’s brought about some very positive changes. There is something invigorating about engaging in a life and death struggle daily – it sharpens your senses, helps you focus on the critical issues and is incredibly freeing.
With heightened clarity, petty things fell away and pressure I felt to do this or that melted into the background. I focused all my energy on battling this monster. It brought about complete sobriety (22 years and counting) and swung my path back to the Lord and the Church. I give thanks to my God always for allowing me this much time on earth and pray daily for more time.
Last week I spent a few days in Piedmont Hospital Atlanta on the Transplant floor battling an infection in my bile ducts. My liver disease has progressed to the point it’s considered “decompensated” — another word for “this ship is sinking.”
For the briefest of moments, I thought I was going to hit the magic number of 25 or more on my MELD. At that point, I could conceivably have a transplant. I’m stubborn by nature and apparently so is my liver. My MELD wouldn’t budge above 21.
I spent some time walking the floor at Piedmont because there is only so much time you can spend in an uncomfortable bed tethered to an IV dispenser. I invite you to walk with me on this journey as I search for a living donor and/or wait for my MELD to rise enough to qualify for cadaveric donation. Thanks for taking the time to read my first blog post!
– Brenda
