Hello I'm Thomas Mahinulani Novikoff
I was born on Friday March 13th 1981.
On May 16th 2009 I was diagnosed with a Extrahepatic Biliary Stricture. That's about the best explanation I can give you up to this point. Here's a picture of it.
The Y-shaped black part in the upper middle is my extremely dilated bile duct.
On May 10th I noticed I was turning yellow, there were other symptoms that just seemed to a function of my diet and dehydration. But the turning yellow thing was the deal breaker, and on the 15th I was lugging my butt into a hospital emergency room to get someone to figure this out. The next day after a urine test, 5 blood tests, an ultrasound, and a CT scan I was having a tube shoved down my throat getting my plumbing unclogged with an
Endoscopic Retrograde Cholangiopancreatography (ERCP). The end result was the picture below.
The tube is the only thing keeping me alive. Otherwise the bile backs up (and bile is toxic stuff), and systematically poisons/destroys the liver. Over time cirrhosis ensues, the liver begins to fail, and that's all she wrote... Thank goodness for modern medicine. Since then I've had the tube replaced 3 times due to occlusion. This results in cholangitis, which for me causes a splitting headache, a fever, chills, and more bile back up.
I've basically been able to resume a normal life...basically. I've been on antibiotics for over 4 months to prevent the cholangitis (the liver is your waste management center so it deposits all the bacteria to get it out, and if it can't go out the conventional way, it's stuck). I take a bile acid called Ursodiol with every meal to help with digestion, liver function, and stent clogging prevention (doesn't do the latter all that well). Otherwise I can still do this...
And still pretty well in fact. I've made some radical changes to my diet . I've cut Gluten out 99.9% (It's near impossible to avoid it completely due to cross contamination). This is because I've also been diagnosed with IBD, possible Ulcerative Colitis. Additionally an earlier diagnosis for Primary Sclerosing Cholangitis [PSC] was another concern. So I have done everything I can to minimize internal inflammatory processes, naturally (no Liver damaging medications). Turmeric, Garlic, and Ginger have become staples to nearly every meal. All red meat is out, which isn't hard for me never liked beef and pork...think about how pigs live....
Anyway my legs have been feeling great. My digestion is an issue, fatty foods just lay me out. I could literally end up in the hospital getting another ERCP.
Right now I'm playing the waiting game. I have an appointment with a surgeon at UCSF October 7th.My doctors can't be certain what it is without a good look at it. My doctors are worried it may be
Cholangiocarcinoma, or at least the beginning of it. One of my biopsy's from the ERCP showed dyplasia, and potential neoplasia which could mean anything, nonetheless...it's not normal in my bile duct. The plan is to open me up to see what's going on in there. I've read all the journal articles, there really isn't any other option. One thing is for sure, my bile duct has failed me..EPIC FAIL. It's permanently scarred/inflammed (or worse). If it's not cancer the plan is to do a
Hepaticojejunostomy. If it is well....a weight weenie would be happy about a pound of body mass will be permanently gone (and I wouldn't have to buy sketchy wheels). The procedure is called a pancreaticoduodenectomy or whipple procedure, not pleasant. I should be able to ride my bike again, but I won't know at what level for a while. I really enjoy getting slaughtered in NorCal, but if I lose even 10% of my normal operating level, it will no longer be enjoyable.
My purpose for riding has always been to prove I belong. If I can no longer belong...
What's a life without purpose?
The surgery was successful with some minor glitches noticed after the first post surgery CT, but the later PET CT scan proved positive showing nothing of concern. As of April 20th I'm am 75% through my first post surgery treatments. It is kicking my arse, specially my blood cells. Still have done 6 races. Once this is finished and my blood is back to normal I'm going on a racing binge.
