I'm Yellow For A Reason

Ah, well the Blog is called "I'm Yellow For a Reason", well this is true, only, I'm not yellow, that would be my brother, Dustin.

He has esstentially been sick since he was 15 years old. He broke his leg, then things went down hill from there. He had started to pass blood and would get these insanely low blood counts, into the hospital and he would get better. They did several tests and discovered he had "Crohn's Disease". Well fast forward a couple years, he moves to Austin and lives with me, he has a bad bout' so off the the ER we go-(where we found his current and fantastic Doctor I might add). After blood tests, colonoscopy we find that in fact it is not Crohn's disease, but Ulcertive Colitis. Ah, managable. He gets that under control, then a couple years later he starts showing some abnormal LFT's (Liver Functions). So, they decide to investigate, and they find this rare disease called Primary Sclerosing Cholangitis (http://www.liverfoundation.org/db/articles/1015) -forever more known as (PSC) on this blog anyway.

He was officially diagnosed with PSC in July 2000. At that time we were told that he would need to look at Liver Transplantation in 3-6 years. It was an "ohmygosh" scenario. But, by all accounts he seemed fine and normal (well as normal as he could be-those who know him could dispute that by his insane goofiness). Life went on, he moved to Idaho for a couple years (2003) and was hospitalized once for this lovely disease. He moved back to Texas in August of 2005 to help deal with some family drama-(and this still goes-but we have had to move past that and that scenario deserves a blog all it's own-but for lack a sanity and well being we will just leave it alone). In February 2005 he went in for what he referred to as an "oil change"-he had an ERCP done, with stents put into his ducts. He had them in for a few months, then had them removed in June 2005. In July 2005 after the follow-up appt from the removal we were told that "stenting" would no longer be an option for him. He has to much scarring occuring on his bile ducts for ERCP procedures to be of benefit to him. We were then told that it was time to start the process to be referred to the Transplant Center.

Well the kicker to Transplant Center, is you have to have insurance or LOTS of money. A liver transplant can cost (by the time you add in evaluations, surgery, 1st year medications etc is almost $400,000.00), http://www.transplantliving.org/beforethetransplant/finance/costs.aspx
oh yeah, way more money than I could imagine making.

Dustin will be eligble for Medicare benefits in February 2007. He will at that time be referred to the University Health System at San Antonio http://www.universityhealthsystem.com/transplant/index.htm

But as we are learning there will be expenses with Medicare-so I am delving into the research of what that is going to cost. Our government has some serious issues with what they consider to be poverty and what they think people should be able to afford and little money. But that is a soap box I do not have the energy to deal with, but will tackle when we get my brother healthy.

Stay tuned, we are looking at funding options-looks like we will do some fundraising to cover costs that will be necessary that are not covered with insurance (such as food and lodging and parking fees etc.) It is even possible that temporary re-location might be necessary as San Antonio is about 2 hours from where we live and if immediate care is needed that isn't an option. Oh the things we are learning.

Well this is enough for now. I will post again later. Cheers!