Friday, May 2, 2014

Give me Ham on Five, Hold the Mayo....

Reference from the movie, "Airplane."

Happy 50th to me !!!  Nah.  I didn't do anything.  Nah.  I may not.  If I'm less tired over the weekend ... maybe something.  Not today, though.

Been at Mayo a few days now.  Here's the long and the short of it:

They still think whatever happened to me was a Drug-Induced Liver Injury, and that the Cymbalta did it.  That's their best guess, plain and simple, but everybody agrees: that's it.

Radiology is still supposed to review my MRI images from UC Irvine.

Pathology is still supposed to review the biopsy slides.

My platelets were low again.  My spleen is enlarged, but the liver doc didn't notice that until I pointed it out to her.  Is this all because of the liver injury ?  Do I need to be monitoring my platelets ?  Shouldn't this have been over and better by now ?  Does any of THIS explain any of the ongoing symptoms ??

They don't know.

I don't think the liver docs have any direction, yet, from the Drug-Induced Liver Injury doc in Indiana, about testing.  Still waiting.

Fairly long visit with Allergy and Immunology, this morning.  My words, not his, but I promise you it matches up with the substance of what he said:

 - In most people with a drug allergy, they have ONE class of reaction and/or it's a reaction to ONE class of medications.  I've had several different reactions to several different classes of medications.  That makes me a very odd duck or an HIV patient (but I don't have HIV; was tested in January; told them to test me again, just to be quadruple sure).

 - He more than agreed with me about their drug allergy testing.  He didn't think it was worth doing.  It's not even right half the time, and it isn't particularly actionable because of that.  It also does NOTHING to account for being on more than one med, or one med over time.  We agreed not to spend the $$.

 - He agrees that -- since each drug event WAS worse than the last -- the stakes are now incredibly high.  Ticking time bomb.  No way to predict what will happen, how bad it will be, or when it might get triggered, but it is reasonable to guess the next one could easily be Very Very Bad.  He mentioned SJS/TENS, and began to explain them to me.  No need, Doc.  I've met a few handfuls of SJS/TENS patients.  Breaks your heart.

 - His advice to me was "If you don't _absolutely need_ a medication, I wouldn't take any."   Then he thought about it a bit and said, "I guess that's easy for me to say, isn't it ?"  I laughed.  "Yeah, Doc.  That's easy for you to say.  I have a banged-up immune system, chronic neuropathic pain in my eyes and Complex Post-Traumatic Stress Disorder."

 - They still don't think the IgG Subclass Deficiency is "it."  They see too many perfectly healthy people with the same Subclass Deficiency who show absolutely no symptoms.  That's what they told me seven years ago.  The thinking really hasn't changed.  Not at Mayo, at least.

 - I asked him for a referral to Psychology, if they had people who specialized in chronic medical conditions that had a profound impact on patient quality of life.  He was going to refer me to Psychiatry until I said .... "Nah.  They usually just give pills.  I'm allergic to pills."  I got the Psychology referral, but it's on 5/12 -- two days AFTER I'm scheduled to fly out of here.  May stay in the area, though.  Have to think about it.  Have had no luck thinking even a day out, lately.  Not even a few hours out.....

Had an abdominal ultrasound this afternoon, and had to drop off a stool specimen for the lab.  Waiting on a fair amount of blood work to come back from the lab, now.  Probably Monday afternoon.

This afternoon, I saw the Ear, Nose, and Throat guy.  Pretty sure he's the one I saw, here, in 2007.  He 'scoped' me.  BIG yellow glop of infectious material in my right ethmoid sinus.  He was able to suction it out, and will send it to the lab.  Anatomically, my sinuses are plenty open and not ridiculously inflamed.

Just ... infected.

But ... he said ... when the results of the snot study come back from the lab ... what should we do ?

He won't prescribe me an antibiotic, having learned what we now know, and won't prescribe me an antifungal for the same reason.

He wasn't surprised that my trials of steroids and nebulized [antibiotics, steroids, antifungals, and NAC] didn't work.  I'm just one of those patients who they really can't fix or manage, and don't know why I'm as bad as I am with recurrent infections and recurrent nasal polyps.

I asked him if sinus infections - left untreated -- WILL eventually resolve.

Not for everybody, but ... for the most part ... yes.  "But a guy like you could feel pretty miserable for a few months, if you can't treat a sinus infection."

Yeah, Doc.  I have that feeling, too.

Can the infections migrate, and become serious and potentially deadly ?  Yes, but that's very rare.

I didn't review the irony of that statement (ie, every issue I HAVE is rare) with him.  Why bother ? ;-)

He thought I should try a Xylitol based nose spray.  Not likely to help, but shouldn't hurt anything.

Monday morning, I WILL meet with a Genetic/Mitochondrial doc.

My vision has been very blurry, here.  I'm certain it's' the dry, heated air.  A stable tear film layer is critical to the whole focusing system.  You dry out a banged-up cornea and you get more blur.  Mine are very dried out.  Nonetheless, I'll also be seen by Mayo Ophthalmology on Monday.  They aren't all that good, in my experience, but ... what the heck.  I'm here.

This is kind of the end of the line, Folks.  I can think of nothing left to do ... nobody left to see ... nothing left to try.

 - Pray the pain away ?

 - Pray the PTSD away ?

 - Pray I don't get sick again ?

 - Just ... survive and exist until my energy starts coming back and I can DO something again ??

The odds .... are definitely not in my favor.

International travel seems ridiculously risky, now.  If I get sick overseas, I used to go see doctors and take the pills they gave me.  Now ... not quite so much.  Probably have to buy a MedicAlert bracelet, too, if they make any that say "No Meds !"

Oh ... maybe I could go spend six months living by the Bastyr Naturopathic College, up in Washington, and just pay them to try to rebuild my health, from the ground up, their way.  Maybe.

Everybody agrees with me that a lifetime of meds ... set against a basically fragile constitution ... and an unbelievable amount of sickness, medications, stress, pain, and surgery since the Colorado thing happened ... could easily have banged up my mitochondria pretty badly.

Yet another case of banged-up armor ... dramatically weakened defenses.

So ... while I DO want to know ... whatever I CAN know ... everybody agrees, so far: none of this is 'actionable.'  None of this can be treated.  The way things look, the box that defines my life is just profoundly small.  Claustrophobically so.

There wasn't a lot of upside to being optimistic about this trip, so I wasn't.  It's playing out as I guessed it might, plus or minus some Monday Morning Miracle on Mitochondrial Street (no way).

In my hotel room, I've mostly had to wear my prescription swim goggles to keep the dry air from further stressing my eyes.  But they fog up quickly, and ... I see very poorly out of them, so I'm getting very far behind on e-mails.

Sorry :-(

While I haven't been "sleepy," I've been maddeningly exhausted.  I walk to my appointments, and pretty well manage a 20 minute walk, twice a day, outside, but ... after that ... I collapse on the bed and stare dumbly at the television.

I'm eating well, but not much.  No appetite.  Losing weight again.  Que sera sera.

Fleegle The Frog is here.  My faithful sidekick.  He keeps his spirits up -- somehow -- no matter how dicey things seem.

Frog power, indeed.....

So ... Ciao for now ... from the 5th floor hotel room ... across the street from ... the Mayo Clinic offices of ... The Gulag.

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