Making some moves, or ... Something's Gotta' Give.
I did some research. I talked to the second opinion GI guy. I talked to my two *wonderful and brilliant* MD friends -- neither of whom is a Gastroenterologist.
One is totally in my camp: we're not going where we should be, as quickly as we should be.
The other is saying ... in essence ... what Dr. Hu is saying: biopsies HAVE risks, and ... may or may NOT tell us anything.
Medical tie-breakers have LONG been my purview ... and I'm exceptionally tired of it ;-)
I'm going to have the biopsy. Scheduling it. Learning a BIT about pathology, in the hopes of talking with the procedure doc about .... best practices to maximize the chances of getting a useful sample.
Learning a bit about pathology to figure out the likelihood that even a useful sample will give us *material* information. I think it's very likely, though you have to couple it with what you DO know -- labs, symptoms, time-course, etc. -- to come up with a solid diagnosis.
It's art, not science, but based on a CHUNK of good science, and LOTS of data.
Sometimes -- more often than we should know -- that's medicine, Folks.
There are an AMAZING number of things that this COULD be ... that biopsy + clinical data WILL tell us, and some of them ... are either very bad, DO require treatment/management, CAN recur, or ... all of the above.
Yeah. I need this answer.
I've also been evaluating the wisdom of the drug "re-challenge:" starting back on the meds, one by one, to see if and when one of them blows you up.
Can't do it.
Won't do it.
Wayyyyy to risk-averse, right now.
Which pretty well shoots dead the former goal: get to Boston, and try to survive another six week fitting marathon to get back into my scleral lenses.
So I reached out to an old acquaintance -- an eye doc who's started using laser scanning to feed a CAD/CAM lens fabrication and fitting process. Could you fit me better ? Faster ? With fewer trial pairs and less pain ??
Maybe. He says maybe.
Sending HIM more data.
I don't think I could DO the 6+ week thing again. Could I do 2-3 weeks ???
Maybe. I say maybe. Only one way to find out.
For those keeping score at home ... here's the view from the Gulag:
1) Get scleral lenses;
2) Get best possible prescription for glasses to wear OVER the scleral lenses. Even if the sclerals DO give me 20/20 vision ... I need the glasses to stabliize my alignment, prevent double vision, and lessen the load (fatigue) on my eyes.
This turns into near-vision AND distance vision prescriptions. No bifocals for me. Eyes can't take them. Opticians can't make them. Not for me.
This piece ... will take weeks ... and LOTS of measuring, averaging, throwing darts, hours on end of hashing this thing out with my favorite ophthalmologist.
Would have to get a hotel, and live near his office. Couldn't drive;
3) If we can come up with the prescriptions .... figure out who the best opticians (glasses-MAKERS) are, and START with them.
- distance glasses
- near glasses
- 'outdoors' glasses that wrap tightly to seal off wind, dust, prevent tear evaporation, etc.
- maybe swim goggles
One pair first. Get them made TO the prescription ... evaluate the prescription ... tweak if necessary (back to the last doc) ... re-make if necessary.
Wash. Rinse. Repeat. Get ONE good pair of glasses.
Move down the list to the other pairs of glasses.
4) Figure out where that leaves me in terms of ability to live -- how resistant I am to sunlight, humidity, heating/air conditioning, wind, etc.
5) Figure out what my *capacity* is -- combination of (4), above, and what kind of VISION I wound up with: Can I .... ski ? Bike ? Motorcycle ? Drive ? Snowshoe ?? Run ? Woodwork ??
If everything went smoothly, I figure I could knock all of this out in under two years ;-)
But ... first ....
As any of you who know me would know ... I've always eaten well, gotten lots of exercise, and taken pretty good care of myself.
Since this all started, though (Christmas Day), I now have high blood pressure, high cholesterol, high triglycerides, and ... get winded walking up a flight of stairs. The furuncles (staph infections) don't seem to go away, either.
Basically, after I figure out what this is/was ... I actually have to start by figuring out if this OTHER stuff is going to go away on its own, or ... if there are other -- more pedestrian -- medical challenges that need to be dealt with.
Meanwhile ... there's no putting down roots. Did that before. Got the SHIT kicked out of me, and the world knocked out from under me. Just ... keep ... living in month-to-month hotels with kitchenettes, and evaluating possible cities/regions for livability.
Or become an alcoholic and serious recreational drug user, and wait for it all to just go away.
No decisions, yet ;-)
Ciao for now ... from ... have you figured out why we call it the "Gulag," yet ?? ;-)
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.
Okay ... short and sweet.
Met with the surgeon, before the operation. I asked him if he'd seen the radiology report AND the MRI images. He had.
Do you have an opinion as to what we're looking at, Doc ??
Yeah. I think it's cancer.
[Note: at this point, they ALL think it's cancer]
Here's the short part. Post-op ... the doc says he found nothing, did NOT take a biopsy. That's it. He saw no occlusion ... no stricture ... no tumor ... nothing. It up and disappeared like a fart in the wind. He did an Endoscopic Ultrasound AND an ERCP.
My bilirubin is down, again, but not to normal, and it COULD be because of the cholestyramine that I'm taking.
My ALT, AST, and Alk Phos are still quite high.
Which points to autoimmune, but ... I am NOT happy that he didn't take a biopsy. He was asked to, by my primary care GI guy. Why would you THINK it's cancer, and then not take any kind of tissue sample ?? Why wouldn't you take a brushing (for cell analysis) ... from where you SAW the blockage on the MRI ?
It makes zero sense.
We called the primary care guy. Left a message. I'd like to see him ASAP (currently scheduled for Tuesday). Will probably need to be referred to Immunology.
Cancer would have been a simpler diagnosis, if not "better" or easier. Autoimmune -- particularly in a complicated patient with a diagnosed immune deficiency -- is not a good thing.
We're all very confused. I suspect Dr. Hu (my liver guy) isn't going to be happy about this. It's more likely than not that I'm going to have to undergo a separate liver biopsy ... through the skin ... instead of the whole "While you're IN there" that today would have been.
I dunno' what to say.
I'm scheduled for several procedures on the 20th:
ERCP
http://digestive.niddk.nih.gov/ddiseases/pubs/ERCP/
LIVER BIOPSY
http://digestive.niddk.nih.gov/ddISeases/pubs/liverbiopsy/
EUS
http://www.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/diagnosis/Endoscopic_Ultrasound_EUS.php
I talked with the procedure doctor, this afternoon. I was right: they WILL put in a stent, to leave the duct open, after clearing ... whatever the blockage is.
It IS a plastic stent.
Plastic stents ARE at significant risk for infection (formation of biofilms).
Plastic stents DO have to be removed and replaced every couple (2-3) months. It's amazing how UN-interesting THAT is to me ;-)
Plastic stents are much cheaper than metal stents, which ... have their own problems. Candidly, they put plastic stents in people not expected to live more than six months. They put metal stents in people who may live more than six months. They also put plastic stents in people as temporary measures while they figure out what they're dealing with. Cheaper.
I told the doctor that I didn't want to be on the Stent of the (Every Other) Month Program. General anesthesia ... every other month ... forever ? Pfffft.
He said, "Well ... doesn't it seem reasonable to be MORE concerned with what you HAVE, right now, and with what's causing it ??"
Well .... ordinarily, I'd agree with you, Doc, but ... see ... there's a lot of really bad stuff that I've been told this COULD be, and that I'm not going to necessarily commit to fighting. Like ... cancer."
Dr. Lee said ... "I understand. We have lots of patients who -- either because of age, overall health, religion, etc., are going to defer additional surgeries. In that case ... yes ... I think placement of a metal stent DOES make sense."
Okay. Thanks, Doc. Now ... let's figure out What's Eating Gilbert Grape (his liver, anyway).
I've still been bouncing around, trying to find that ONE thing ... that this COULD be ... that falls into the category -- even loosely -- of ... "Crap. THAT's not so bad......."
So far ... I'll still have to hope it's caused by either a prior surgery (that I didn't have) or stones (that I don't have). Those are the 'benign' causes of biliary obstruction.
Figure ... whatever they take out of me ... gets sent to the lab. 3-4 business days. Maybe early on the week of the 24th ... we should have a name and a CV for my new li'l friend.
The best thing about leaving my job at ProFlowers was .... not stressing out so much during the flower holidays (eg, Valentine's Day ... now !). If this is how February is going to be ... I wonder if I can get my old job back. May as well get paid for it ;-)
News You Can Use:
Higado. Higado is Spanish for liver.
Odd that I know that.
Just got back from the Liver-ologist's office. The fellow (verrrry likeable doctor) said,
"Did anybody call you about your MRI results ??"
Uh, no.
"Well ... we found something on your MRI. They're calling it a "short segment, high-grade stenosis of the common hepatic duct, just distal to the bifurcation with mild central intrahepatic biiary dilation. Recommend ERCP with brushings."
So ... you found something, where the better answer was you having found nothing.
"Well ... yeah."
Way, way WAY too soon to know what's clogging up the pipes, but ... as they were careful to point out, several times, they "can't rule anything out."
I get it, Doc. It could be cancer. Message received, loud and clear.
They're going to do something called an ERCP. For those who don't know (yeah: me), that's an Endoscopic retrograde cholangiopancreatography:
http://en.wikipedia.org/wiki/Endoscopic_retrograde_cholangiopancreatography
But what else COULD it have been ??? ;-)
They'll use a wire and a snake and a couple of ridiculously expensive attachments (julienne blade, coffee grinder, ice crusher, dough hook) to go from Point A (mouth) to ... the nether regions. Along with getting a good look at What Lies Beneath, they may be able to get brushings (for cell analysis), a biopsy (a bite), and/or ... do a balloon inflation of the constricted part, and insert a stent, if not remove the blockage through the ERCP.
The samples will show both what the blockage is and .... what sort of cellular problems (disease process) might ALSO be affecting my liver. As the fellow was quick to point out, it's USUALLY not two things, simultaneously, but ... it sure can be.
If they do put in a stent, to keep the duct open ... more likely than not ... the procedure would have to be repeated every three months ... forever. Yippee Skippy. That (stent. Wash. Rinse. Repeat) ... looks far more likely than not, at this point.
By implication, the doctors were also clear that it could be Primary Sclerosing Cholangitis, and/but that I really don't want it to be THAT, either:
http://en.wikipedia.org/wiki/Primary_sclerosing_cholangitis
Hey ... Doc ?? What's the really okay stuff that it might be ????
[crickets] [a lone tumbleweed bounces against the dusty landscape]
Oh. I gotcha.
"We're going to get you in, to be seen by ... and have these procedures done by ... the head of the Department, on an urgent basis. The department head revolutionized a technique called Endoscopic ultrasound that he'll also employ to poke around while we're all up in your grille:"
http://en.wikipedia.org/wiki/Endoscopic_ultrasound
"This should tell us if we're looking at pancreatic cancer."
They drew another nine tubes of blood after that. Along with a whole lot of Who Knows What, they're specifically looking for highly elevated CA-19-9 antigen levels:
http://en.wikipedia.org/wiki/Ca-19-9_antigen
No. You don't want THAT to be high, either.....
I picked up copies of the MRI images and report, and will schedule an appointment with the 2nd opinion liver-ologist with whom I met last week -- that would be the one who said, "Oh, no. You REALLY want the MRI to be negative. A positive finding on this MRI can only mean bad stuff."
I ate lunch at McDonald's. Candidly, I just figured ... why not ?
That's just a line from the awesome Golden Earring song, "Twilight Zone,." It really has no relevance to this post, except that I needed a more genteel way to say, "When the shit hits the fan."
Thoughtful of me, no ??
Nobody wants to be "that guy." (assume gender neutrality was intended, there ......)
"That guy" manifests itself in myriad ways. In this case, I mean the person who posts/only posts/mostly posts the saddest bits of their life on Facebook.
But ......
I've been bedridden since Christmas Day 2013. Without going into all the details, we know -- at this point -- that my liver has been asking permission to fail, and proving its willingness TO fail by functioning at a greatly diminished capacity. The onset was sudden -- a matter of hours.
I'm all jaundiced. My skin and eyes are yellow. That's the "bile" that the liver is meant to clear out. Lemme' tell ya: that bile feels like a million bucks as it oozes and wends its way out of my chemically burned, Not Protected By Fluid-Filled Lenses eyeballs.
As it turns out, though, yellow IS a pretty good color for me. Does that make me an autumn ??
Stage 1 of something mellifluously called "Hepatic Encephalopathy" involves an inverted sleep-wake cycle. I am awake ALL night long, and struggle mightily for an hour or three of sleep over the course of the day.
And then there's the "pruritis." That's itching to you and me. The same "biliary salts" that exit my eyes exit every pore in my body, causing an unmanageable itch that -- were my liver not in jeopardy -- would surely drive me to drink.
I'm getting good care. As a guy who's been a patient since about the second trimester in utero ... unfortunately ... I can ramp up on medical stuff as quickly as my wretched little eyes will allow. I know enough to know that .... at this point .... we need more info. Can't rule anything out, yet.
Because I have a compromised immune system, it is agreed that hospitalization is inappropriate, unless [any of the following] happen.
In March of last year, I threw the kind of Hail Mary pass that the OLD Peyton Manning could throw (knowing NOTHING about sports, I really hope that worked !), and took off for Central America, on the off chance that ultra-high humidity would offer relief from pain from the chemically burned eyes.
At the end of a pretty decent three months, the magic wore off, and I returned to the States.
I had no Plan B before Central America. Perhaps not surprisingly, I have no Plan B now, either. If I did, though, having a meltdown in a major internal organ ... probably wouldn't have been considered.
Since coming back to the States at the beginning of August, I've been working with a Pain Clinic AND a Palliative Care clinic, trying to manage the neuropathic pain that comes from the chemically burned eye thing, but we never made a dent in it. It's possible that any/some/all of those meds could be responsible for what's going on now. Too soon to tell.
If they arrive at the conclusion that it quite likely WAS a medication, then the only definitive way to prove it, and which one (important) is to "re-challenge me:" start me on the drug again, closely monitoring liver function, and push up dosage slowly, over time, praying all along the way that The Shit Doesn't Break. Again.
But none of that is for today. Today, we have to get/keep me stable, keep weight on me (think I've lost 15 pounds since Christmas Day), and try to put a name to the face on .... whatever's going on, here.
As many of you know, this all began in 2009, when -- having moved into our new Colorado home -- life fell apart. Honestly, it didn't "fall apart" as much as it was wrest from me by comparatively normal looking, but absolutely soulless, evil, and sadistic people who lived in the same Colorado community as I did -- people who, literally, did not believe that I am medically disabled.
That City, that County, that Judge have imposed a Gag Order on me, barring me from telling my story publicly until something like September of this year.
... on pain of being prosecuted for a felony that I did not commit.
I'm at the ragged edge of not giving a damn what those people do to me. I'm at the ragged edge of writing and posting the story, circulating it to media outlets, naming names, including photos, home addresses, e-mail addresses, and phone numbers of the players, documents uncovered through Discovery, etc., etc., etc.
"Freedom's just another word for ... nothing left to lose."
They truly cannot take anything more from me than they already have. I'm IN prison, now ... albeit a very plush, ocean-view prison in Southern California (thanks, Mom !!!)
It is directly because of .... That Of Which I Cannot Legally Speak .... that I can no longer wear the lenses that gave me back .... a big chunk of my life. And it is now anything BUT a certainty that I'll ever be able to wear those lenses again.
Four Southern California corneal specialists (one of whom is trained in fitting those bionic lenses) have told me, since August, that ... no ... you MUST not wear them. They have told me that I must get BACK to Boston to reprise the 6+ week "fitting process," to see if I CAN wear them again.
But I'm absolutely certain -- having done the six-week trip twice already -- that I'd enjoy Gitmo a hell of a lot more. That's why we were trying to get control of the pain: to allow me to get to Boston, and survive the process yet again .... but ... this time ... lacking the former confidence (read: carrot) that there would be a big payoff if I did get through it.
Naturally, we had to taper me off of each and every pain med, over the last month. I'm flying Au Naturel again ;-) Debilitating Eye pain. My closest friend and constant companion. 'Tis good to see you again, Old Chum.
I'm not sure why I chose this night .... my wife's birthday .... February 4 .... to spill the beans.
But there they are. The Beans.
Sadly, because of my eyes, I have had to -- and HAVE -- risen from the ashes (of medical disability) more times, in 50 years, than I care to recount.
But .... today ... the ashes feel pretty good. Familiar. Comforting. Safe. Maybe I'll just be early for Ash Wednesday this year.....
Stay tuned.
Ciao for now .... from the Idiopathic Liver Injured bowels of .... The Gulag.
