My name is Darryll DeCoster. This site is more or less a blog about my liver disease, P.S.C., and my trek from being sick, to getting listed to finally receiving the transplant.
Who I am
I am a 43 year old father of 2 absolutely insane boys and married to a beautiful woman who is supportive, loving and a wonderful mother. I am a Web Designer by trade and a Photographer by education. I spend the majority of my time surfing the Internet, playing computer games, cycling, chasing my sons around our house, back yard and neighborhood. We live in Portland OR, and for those who don’t know it – Portland is every bit as hipster as they. It really is.
Why I needed a(nother) transplant
Around 1994 I was diagnosed with PSC, or Primary Sclerosing Cholangitis.
Primary sclerosing cholangitis is a disease primarily of the bile ducts, both inside and outside the liver. The ducts of the gallbladder and pancreas may also be involved. The walls of the bile ducts become inflamed (cholangitis). The inflammation causes scarring and hardening (fibrosis) that narrows the bile ducts. Because bile cannot drain properly through the ducts, it accumulates in the liver causing damage to liver cells. Eventually, so much bile is accumulated, it seeps into the bloodstream. Finally, with long term cell damage, the liver develops cirrhosis (hardening or fibrosis) and it can no longer function properly.
Basically, I was getting sick about every other month for 2 straight years. When I was not sick, you wouldn’t really even stop to think I needed a transplant, but then I turn into some sort of two-legged, walking lemon and all hell would break loose. By the grace of God I received a transplant on January 4th, around 3am by a very talented team of doctors – I am now recovering.
To every single person who either cut, stuck, taped and poked me, kicked me out of bed, yelled at me for being a pain in the jar, drugged me, and even pulled out those damned drains: Thank you.
So yes, I received a second liver transplant.
Recurring PSC is a total dick punch. Everything was fine up until about 3 years ago when I started feeling sick, and fatigued. I used walk 3 miles nearly every day around the Esplanade in downtown Portland, then one day I simply started feeling seek. Like feeling like I’m going hurl my banana pancakes kind of sick almost all the time and tired, I’d get really tired; both of which persisted through a number of drug additions to my list and few have helped. I took quite a while to get here, to get to recurring PSC – now there’s no doubt.
I got the call for liver number two. And as luck would have it my entire family was at my home for dinner. August 14th, around 5pm. Things have been slowly getting better as I walk further away from deaths door, but it’s a long haul.
What this site is
Deliver my liver is many thing to me. First off, the name makes me smile. It helps me cope with the 800 pound Gorilla I am wrestling with – so don’t be put off by the name. It is a place where I can hopefully build a community of people to share information and thoughts, especially with me. There are a lot of people out there with this disease, and even more information on it. I also hope to be able to help others gain more understanding of what this disease is and what can be done to help those who have it. And finally, it is a place for me to gather donations to help cover the massive expenses associated with having a transplant. I have excellent health coverage but it doesn’t cover everything. This last part is the strange part for me. I am not one to ask help from others often, or at all. I have, in the past, taken great pride in my abilities to handle whatever came along – but this is so far beyond what I can handle by myself – I am seeking help where I can find it. This is an open forum to all who would stop and share a thought, so feel free to leave behind whatever you feel like.