Just got off the phone with
David Kleiner, MD, PhD ...
Laboratory of Pathology
Head, Histopathology and Autopsy Pathology
Staff Clinician
Center for Cancer Research
National Cancer Institute
http://ccr.cancer.gov/staff/staff.asp?profileid=5843
a/k/a ... liver pathology stud.
...
He finds no fault with the previous pathology report, but ... in consultation with the liver docs at his weekly "liver biopsy conference ..." they are certain that this IS a Drug-Induced Liver Injury.
They think it's FAR more likely that it was caused by the Cymbalta (prescribed at a ridiculously high dose, to treat the corneal neuropathic pain) than that it was caused by the anticonvulsant that I took in October.
[60mg a day is considered a pretty high dose of Cymbalta. I was prescribed (and was taking) 120mg. No reason in the world not to be monitoring my liver functions during therapy with that high a dose. Sigh......]
He thinks the "allergy testing" (either skin testing or 'in vitro' testing, in a petri dish, effectively) is the best route to take, to try to get even more certainty about this.
Agrees that there's significant risk in my taking ANYTHING (he thinks narcotics are low risk, but not NO risk) until I've met with Immunology and had this sort of testing.
Called mine a "very interesting case." I told him how tired I had become of being medically interesting. He said it's common among his pathologist colleagues to say ... in pathology, you don't WANT to be interesting. We both had a laugh about that. I stopped laughing first ;-)
April 4th with Immunology. I just have to HOPE that UC Irvine Immunology is familiar with, and DOES the kind of drug allergy testing that I'm talking about, and ... if they DO this kind of testing ... that it would elicit a problem with Cymbalta, if it wasn't a "classically allergic reaction."
There's a long way to go, and ... from what I've seen in terms of how long it takes to get appointments with these specialty clinics ... I have absolutely no idea how long it's going to take.
I'm not holding up very well. Sleep is poor. Eyes -- not surprisingly -- hurt. The viral, bacterial, and fungal stuff ... won't go away, and ... I STILL can't take any meds to treat it.
And ... Mom got sick yesterday morning. I had slept so poorly, and so little, that I had to call Uncle Stu to come up and help ME help HER. He did ... bless his gigantic heart. Mom's getting better. It was an episode ... but a vicious episode, for sure, and plenty painful to watch.
One day at a time .... I guess.
Time passes slowly ... here ... in the vast wasteland that is ... The Gulag.
Friday, March 28, 2014
Friday, March 21, 2014
Annnnnd ... the biopsy result is now in question :-/
That's how it goes -- particularly if you don't take the first answer you're given ;-)
I reached out to the half-dozen top Liver Pathologists (that I could find) in the States. This morning, after getting a copy of my actual Pathology Report, I forwarded it on to the same bunch.
One (my first-round draft pick -- the one I was hoping to have on my team, above all the others) wrote back:
Sounds like I'm medically interesting ... again :-(
I'm trying to arrange to have the slides sent to this mensch.
In the immortal words of the bad guy, toward the end of Dirty Harry .... well ... y'know what ? You take about a minute and a half and figure out what line I was thinking of:
Got work to do. It's what we do ... here ... in the hystiocytic doldrums of ... The Gulag.
I reached out to the half-dozen top Liver Pathologists (that I could find) in the States. This morning, after getting a copy of my actual Pathology Report, I forwarded it on to the same bunch.
One (my first-round draft pick -- the one I was hoping to have on my team, above all the others) wrote back:
I have been thinking about your case since this morning and I just read the pathology report you sent. My first thought is that this is probably not drug-induced liver injury, mainly because your bilirubin came down so quickly. The liver biopsy report is consistent with this—there is some residual bile in the liver (a normal liver would not have visible bile) along with the clean-up cells (histiocytes). It is not a specific pattern, and is probably most often related to acute obstruction. The pathologist noted that they didn’t see evidence of obstruction, but if the obstruction doesn’t last very long all you might see is what was described in the report. It can be related to drugs, but the elevated bilirubin usually lasts for weeks when a drug is the cause. One possible explanation is that you passed a gallstone that briefly caused obstruction, but then passed, allowing the bile to flow normally and the blood bilirubin to quickly fall into the normal range. There may be other explanations as well. Infection could cause bile to accumulate, but usually a blood infection would be required to cause jaundice and you would probably be hospitalized and on IV antibiotics if that were the case. Drug injury is always possible, but is pretty rare and you have to exclude all the other possibilities before you conclude that a drug is the cause. In that respect drug-induced liver injury is very different from the more common skin reactions that happen with medications. If you want an official second opinion on the biopsy, I can do that if the slides are sent to me for review. There is no charge for a second opinion, but I’m not sure I could say much more than was already said. If you’re still concerned, you could see a hepatologist (liver specialist), rather than someone who mainly does gastroenterology. I don’t know any of the hepatologists at UCI, but I know one or two at USC. I’m really only qualified to advise you about the pathology—you would need to see someone else for a more complete review of your symptoms and test results.
Sounds like I'm medically interesting ... again :-(
I'm trying to arrange to have the slides sent to this mensch.
In the immortal words of the bad guy, toward the end of Dirty Harry .... well ... y'know what ? You take about a minute and a half and figure out what line I was thinking of:
Got work to do. It's what we do ... here ... in the hystiocytic doldrums of ... The Gulag.
Thursday, March 20, 2014
Preliminary Biopsy Result !!
Dr. just called. Pathology Lab says that it's a drug-induced liver injury.
He was in a hurry, so that's all I got for now.
Left a message for his assistant, asking for a copy of their report asap.
I may need to send everything to a specialist in liver pathology, and see how well we CAN pin down WHICH drug.
Immunology (I go there on 4/4) should be able to test to see what drug it was, and what drugs I might NOW be reactive to. This isn't totally safe, but may be worth the known risks. Have to do it. Safer to do "patch testing" than to roll the dice by taking the actual meds.
What I've read says that ... particularly since this is NOT my first drug reaction ... my body is now "sensitized" to any number of OTHER drugs -- of ANY class (not just ... whatever it was that got me this time OR last time).
And subsequent reactions are nearly always MUCH quicker and MUCH more severe.
Meaning: can't take/treat anything until we know more.
My bet was/is Anticonvulsant Hypersensitivity Syndrome:
http://www.medsafe.govt.nz/profs/puarticles/6.htm
Which ... since it's not my first time with a serious adverse reaction to THIS class of drug ... could, literally, have killed me.
I told the Pain Clinic that I was allergic to Neurontin (another anticonvulsant), and that I believed I HAD Anticonvulsant Hypersensitivity Syndrome. They assured me that -- if we started off at a very low dosage, and pushed it up very slowly -- I'd be fine. They prescribed it, off-label, for treatment of neuropathic eye pain.
So ... I'll meet with Immunology, AND meet with the Mitochondrial folks, in mid-May.
I now have a LOT more information than I did this morning, but ... I still need a lot more.
And a lot more sleep ;-)
Still nothing.....
It's pretty ridiculous at this point, but I STILL haven't heard anything.
I sent a fax to the doctor's office: are YOU still waiting for the Lab to send the results, or have they sent them, but they died in YOUR office ??
If YOU haven't received them, please call the lab.
If you HAVE received them, then call me, and I'll come pick them up. I'd like to chew on them, until the doc gets a chance to go over them.
And/or ... forward them to another Pathologist.
No response. Left a follow-up voice mail. No response.
Meanwhile -- not having slept much last night -- I DID wind up in a 3am e-mail exchange with the Director of Immunology (he was abroad, and not necessarily battling insomnia).
I asked him if:
- he could get me seen before April 4, and
- he could arrange for a Faculty doctor to see me, and not just the Fellows (basically, students).
He replied:
They're almost as good as real doctors !!
Hoh-Boy.
Sinus infection is pretty bad. Fatigue is pretty bad. Been pretty much confined to bed ... again ... for 20+ hours a day. Watching the tube ... burning my eyes trying to figure out Next Steps ... and ... waiting.
We're hearty stock, we ... we denizens of .... The Gulag.
I sent a fax to the doctor's office: are YOU still waiting for the Lab to send the results, or have they sent them, but they died in YOUR office ??
If YOU haven't received them, please call the lab.
If you HAVE received them, then call me, and I'll come pick them up. I'd like to chew on them, until the doc gets a chance to go over them.
And/or ... forward them to another Pathologist.
No response. Left a follow-up voice mail. No response.
Meanwhile -- not having slept much last night -- I DID wind up in a 3am e-mail exchange with the Director of Immunology (he was abroad, and not necessarily battling insomnia).
I asked him if:
- he could get me seen before April 4, and
- he could arrange for a Faculty doctor to see me, and not just the Fellows (basically, students).
He replied:
We see patients with fellows, who are very good, almost ready to go out and practice themselves.Maybe it's just me, but ... I didn't feel very encouraged by that. It was as if he damned them with faint praise.
They're almost as good as real doctors !!
Hoh-Boy.
Sinus infection is pretty bad. Fatigue is pretty bad. Been pretty much confined to bed ... again ... for 20+ hours a day. Watching the tube ... burning my eyes trying to figure out Next Steps ... and ... waiting.
We're hearty stock, we ... we denizens of .... The Gulag.
Wednesday, March 19, 2014
I believe this speaks for itself
I will give (a link to ... an online explanation of) a Bitcoin to anybody who can tell me the original source of this (no. I don't mean the URL of the image. Sheeze ! Geeks !!)
Tuesday, March 18, 2014
Tick-tock, tick-tock, tick-tock, Peter ... Tosh, tick-tock
Okay. The waiting definitely IS the hardest part.
Called the doc's office this morning. His assistant (whose mother just got a cancer diagnosis, but ... no word on HER staging, etc yet) said .... no results yet.
I asked her ....
Does the Pathology Laboratory GET all the other (ie, Clinical -- labs, time-course of 'disease process,' imaging, etc.) results and THEY make the diagnosis, or ....
Do they just evaluate the specimen, and give THAT info to the doctor (with some fancy terms like "Submassive Hepatocellular Necrosis") and let HIM make the diagnosis.
??
It's the latter. The lab sends a lab report to the doctor. He puts the puzzle pieces together.
Which has me already locking and loading Plan B.
This is very complicated stuff. I've figured out who the leading Pathologists are *for dealing specifically with liver disease.* At this point, I'll pretty much plan to:
- get in touch with them
- find out if they'll work with me
- find out what they'd need from me, all wrapped up in a nice, neat little package
What the best in the business DO with all this sort of liver disease information:
THIS
or ....
THIS
This one really is for all the proverbial marbles. I need the answer to be the best, most accurate, most comprehensive, and most definitive answer I can get.
And THEN I need to do my homework.
So I wait.
And I think of Peter Tosh's music ;-)
Meanwhile, I've been running recurrent fevers since ... well ... probably the biopsy (Thursday). Not high enough to be specifically concerned about, but high enough to have me feeling miserable, AND ... since I can't take anything FOR it ... high enough to stay that way ;-)
And my sleep-wake cycle kind of reversed again. No "hepatic encephalopathy," this time, though ... methinks. Just good old fashioned stress ... managed the best I can.
Of COURSE, the telephone wakes me up ... 2-3hrs into sleep. Of COURSE, it does ;-)
Since I'm waiting for calls from doctors, though ("UNKNOWN CALLER" on the caller ID), I have to half wake up and take the calls.
Supposed to get another Liver Function Test blood draw. Have been "supposed to" for days, now. No hurry. Will wait until I can safely drive. Or ... like most Southern Californians seem to do: throw caution (and the safety of others) to the wind, and just go REALLY fast :-)
On a positive note ... the weather's been awfully nice :-)
Ciao for now .... from .... the wishing-I-were-cryogenically-frozen outpost of ... The Gulag.
Called the doc's office this morning. His assistant (whose mother just got a cancer diagnosis, but ... no word on HER staging, etc yet) said .... no results yet.
I asked her ....
Does the Pathology Laboratory GET all the other (ie, Clinical -- labs, time-course of 'disease process,' imaging, etc.) results and THEY make the diagnosis, or ....
Do they just evaluate the specimen, and give THAT info to the doctor (with some fancy terms like "Submassive Hepatocellular Necrosis") and let HIM make the diagnosis.
??
It's the latter. The lab sends a lab report to the doctor. He puts the puzzle pieces together.
Which has me already locking and loading Plan B.
This is very complicated stuff. I've figured out who the leading Pathologists are *for dealing specifically with liver disease.* At this point, I'll pretty much plan to:
- get in touch with them
- find out if they'll work with me
- find out what they'd need from me, all wrapped up in a nice, neat little package
What the best in the business DO with all this sort of liver disease information:
THIS
or ....
THIS
This one really is for all the proverbial marbles. I need the answer to be the best, most accurate, most comprehensive, and most definitive answer I can get.
And THEN I need to do my homework.
So I wait.
And I think of Peter Tosh's music ;-)
Meanwhile, I've been running recurrent fevers since ... well ... probably the biopsy (Thursday). Not high enough to be specifically concerned about, but high enough to have me feeling miserable, AND ... since I can't take anything FOR it ... high enough to stay that way ;-)
And my sleep-wake cycle kind of reversed again. No "hepatic encephalopathy," this time, though ... methinks. Just good old fashioned stress ... managed the best I can.
Of COURSE, the telephone wakes me up ... 2-3hrs into sleep. Of COURSE, it does ;-)
Since I'm waiting for calls from doctors, though ("UNKNOWN CALLER" on the caller ID), I have to half wake up and take the calls.
Supposed to get another Liver Function Test blood draw. Have been "supposed to" for days, now. No hurry. Will wait until I can safely drive. Or ... like most Southern Californians seem to do: throw caution (and the safety of others) to the wind, and just go REALLY fast :-)
On a positive note ... the weather's been awfully nice :-)
Ciao for now .... from .... the wishing-I-were-cryogenically-frozen outpost of ... The Gulag.
Thursday, March 13, 2014
Liver Biopsy Was Today
Was at the hospital from about 9a until about 4:30pm. Long day.
Biopsy took only 20-ish minutes. Went fine. No excessive bleeding.
Had to lie on my right side for 3hrs, afterward, to prevent bleeding. No sweat.
Boring, but ... I think my mother had it worse ;-)
But she DID grab me Rubio's for lunch :-D
Probably Monday or Tuesday before we have the results back from Pathology.
One day at at a time.....
Biopsy took only 20-ish minutes. Went fine. No excessive bleeding.
Had to lie on my right side for 3hrs, afterward, to prevent bleeding. No sweat.
Boring, but ... I think my mother had it worse ;-)
But she DID grab me Rubio's for lunch :-D
Probably Monday or Tuesday before we have the results back from Pathology.
One day at at a time.....
Monday, March 10, 2014
A couple of things are scheduled
While this is moving very slowly, it IS moving.
Last week, I set up the appointment for a liver biopsy. That's this coming Thursday. With BIG luck, this will give us some indication of what happened, medically, and ... what -- if anything -- needs to be done about it, or what lingering damage/symptoms there may be.
I'm starting to re-orient MY personal bet, toward ... Anticonvulsant Hypersensitivity Syndrome:
http://www.medscape.com/viewarticle/564608
Last week, I set up the appointment for a liver biopsy. That's this coming Thursday. With BIG luck, this will give us some indication of what happened, medically, and ... what -- if anything -- needs to be done about it, or what lingering damage/symptoms there may be.
I'm starting to re-orient MY personal bet, toward ... Anticonvulsant Hypersensitivity Syndrome:
http://www.medscape.com/viewarticle/564608
In October, I was put on Trileptal (Oxcarbezapine) to treat neuropathic eye pain.
Trileptal IS an anticonvulsant, and -- though I had a serious reaction to an anticonvulsant (Neurontin) once before -- the Pain Clinic docs assured me we'd start low enough, and ramp up slow enough, that I'd be okay.
But I wasn't.
A pretty wicked dermatologic fungal infection showed up, as did three different Herpes Simplex "cold sores" or "fever blisters," in three different locations, around my mouth.
[The cold sores went away. I'm still battling the fungal stuff, though. Can't treat it with systemic antifungals. WAY too risky for the liver]
Within only a few days. I stopped the meds, but ... it's quite possible that -- even 2-1/2 months later -- this IS what caused the liver problem ... maybe in conjunction with the other meds I was on. It would only take a TINY bit of extra tweaking of my (already dysfunctional) immune system.
Stay tuned.
Meanwhile, my beloved corneal neuropathy ophthalmologist has suggested that I be tested for Mitochondrial Disease. I think I mentioned, before, .... you don't want that.
But I DO have an appointment with the UC Irvine Mitochondrial and Genomic Clinic in May. Guess I'll have to stick around for that AND the April Immunology appointment.
I need to know. Too many things that this COULD easily be ... must not be ignored, and would have a significant impact on any future planning.
So ... the apple corer to the liver on Thursday (I'm guessing ... results by next Monday or Tuesday) ... Immunology in about 3wks, and ... Mitochondrial stuff in mid-May.
I'm considering moving into an efficiency (kitchen-equipped) hotel, much closer to the hospital. It might make a LOT of things simpler.
Meanwhile ... the minutes pass like hours, and the hours pass like days.
That's the news ... from... the Awfully Damned Tired offices of ... The Gulag.
Friday, February 28, 2014
Progress ? Er ... movement ??
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 ?? ;-)
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.
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 ?? ;-)
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.
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.
Thursday, February 20, 2014
Had two out of three procedures
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.
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.
Thursday, February 13, 2014
Go with your gut......
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.
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.
Wednesday, February 5, 2014
The Latest from G.I. Joe
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 ?
"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 ?
When the bullet hits the bone
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.
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.
Monday, July 29, 2013
More of "This Is Travel"
Got up at 4am, to catch my 5am shuttle to the airport.
At boarding time, our gate was empty -- never a good sign.
Then the board reflected a change -- our 7:15a flight would now leave at 12:15, missing ALL my connections.
An employee of the VIP Lounge kindly offered to call American, and get us some employees to sort things out.
I WILL fly out at 12:15p, and -- with luck -- make my Miami and Dallas connections, WITH my backpack.
I'll be picking up my rental car at nearly midnight, after my 16hr day. I can see NO reason why a visually impaired, tired guy should have ANY problems negotiating Southern California traffic.
BUT ... if I were you ... I'd avoid the Orange County surface streets between about 11:30pm and 3am ... just in case :-)
Dog bite is healing nicely. Shakira sent me a nice apology note. Very thoughtful, particularly with a dog with no thumbs. Unsure how the space bar worked, but ... it did :-)
TTYS,
The "only a half a day behind" denizens of ... The Gulag.
At boarding time, our gate was empty -- never a good sign.
Then the board reflected a change -- our 7:15a flight would now leave at 12:15, missing ALL my connections.
An employee of the VIP Lounge kindly offered to call American, and get us some employees to sort things out.
I WILL fly out at 12:15p, and -- with luck -- make my Miami and Dallas connections, WITH my backpack.
I'll be picking up my rental car at nearly midnight, after my 16hr day. I can see NO reason why a visually impaired, tired guy should have ANY problems negotiating Southern California traffic.
BUT ... if I were you ... I'd avoid the Orange County surface streets between about 11:30pm and 3am ... just in case :-)
Dog bite is healing nicely. Shakira sent me a nice apology note. Very thoughtful, particularly with a dog with no thumbs. Unsure how the space bar worked, but ... it did :-)
TTYS,
The "only a half a day behind" denizens of ... The Gulag.
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