Tuesday, February 25, 2014

Shit vs. Shinola

February 25 - Meeting with Dr. Hu (and another one of his Fellows).

Some of my lab values are coming down.  That seems to be Dr. Hu's primary concern.

[A diagnosis is MY primary concern.  What happened ?  What will I need to do to prevent it from happening again ?  Will it come back ??]

The fellow and Dr. Hu are pretty baffled about what would be on the MRI imaging, but then disappear before the ERCP (scope) procedure.

Did that tell them anything ?  No.  

Do they have ANY idea what my diagnosis is -- what happened to me ??  No.

The fellow thinks it's far more likely than not to be a Drug-Induced Liver Injury ("DILI").  Dr. Hu and his pharmacist were clear that THEY thought there was only a 1% chance it was a Drug-Induced Liver Injury.  As of today, Dr. Hu is still betting AGAINST DILI.

[Do you guys want a little time to get on the same sheet of music ?  No ??  Okay.]

Nobody knows why Dr. Lee did NOT take a liver biopsy while he was driving around in my abdomen with his new Lamborghini Aventador.

But ... Dr. Hu assures me that even if he had taken (or if we DO get) a liver biopsy ... it wouldn't be 100% definitive about a DILI.  Sometimes, the samples aren't even viable !

[But ... it may well HAVE been viable, and ... could it be more accurate than the divergent guesses you doctors currently have, and/or ... could it be diagnostic of something autoimmune, perhaps]  

Uh.  Yeah.  But a liver biopsy "seems a little aggressive to Dr. Hu, right now."

[And not knowing what the hell happened to me ... doesn't seem very cool to me, right now, but ... there you have it]

I suggested that ... what CAUSED this ... could still be any one of the following categories of thing:

- Drug-Induced Liver Injury

- Immune or Autoimmune reaction

- Cancer

- Parasite

Do either of you -- Dr. Hu or the new Fellow -- believe we can rule ANY of these out, right now ??  Er .... no.

[So ... how about referring me to Immunology and Infectious Diseases, to let THEM start looking and testing ??]

Dr. Hu is referring me to Immunology.  If I want to be referred to Infectious Diseases (parasites would be their thing), I have to go through my Primary Care Provider who ... is out of the office (and probably the country) until 3/14.  Sigh.

Hu wants more blood work in two weeks and in four weeks.  Was going to schedule another MRCP (abdominal MRI), but ... changed his mind ... apparently ... for some reason ... after HE left the room, and the nurse came in.

If I want to go back on pain meds ... as long as they don't contain Tylenol ... he doesn't mind.  

[of course ... since we have absolutely no idea what happened ... I'm not going back on ANY medications.  I'm dumb, but I'm not stupid.  However slight the risks might be, the risk is MINE, not the doctor's, and ... I've met LOTS of people to whom Really Bad Shit has happened as a result of medications.  Including me]

So ... we're about eight weeks out from the day this all happened, and coming up on 5.5 weeks of working with UC Irvine Medical Center, and ... some lab values are going up ... some are coming down ... and we have absolutely no idea what happened.

Tomorrow, I'll make some calls (along with ... ahem ...delivering stool specimen #2 (of three) to the hospital), to see where I can get a liver biopsy ... asap.  Nothing's 100% in medicine ... generally ... but knowing something could be a LOT more helpful than watching these guys fight about what it IS and what it ISN'T.

I may be getting clinically better, but I am profoundly exhausted.  I'm quite certain that the eight weeks that my eyes (along with the rest of me) spent stewing in all the acids that comprise bile, and which were coming out of my entire body .... made my eyes worse.  On Ye Olde One to Tenne Paine Scale ... I've bumped up yet another digit in baseline eye pain.

Uncool.  Double Plus Uncool.  Muy uncool.

As I said ... without fairly serious pain management ... I won't be able to spend the necessary six weeks at the Boston Foundation for Sight, attempting to be re-fit with those incredible lenses ... that once gave me a slice of my life back:

That's the update, Folks.  

From my vantage point, it kind of sucks, and ... rather than moving forward day by day, or one week at a time ... we're now moving forward in one-month increments ... unless 

 - I can make headway with Immunology, and/or 

 - get somebody to refer me to the Infectious Diseases docs ... and/or

 - something turns up on my ... er .... stool samples, and/or

 - symptoms become worse

I would drink if I could.  Of THAT ... I'm absolutely certain ;-)  I'm thinking ... single-malt Scotch ... at LEAST 12yrs old !!

Ciao for now ... from the TWAD (Totally Without A Diagnosis) exam rooms of ... The Gulag.

1 comment:

  1. I've tried them both, and imho, _I_ think shit tastes better.

    My friend suggested Lyme's Disease, which I imagined would have been considered by you, but I figured I'd pass it along. Her experience has been gnarly as well... not to compare or anything, but I value her experience.

    p.s. I _think_ I've got some nicely aged stool samples of yours back here somewhere...