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Extended Byers Family Health Status Update - Unbeliever's Land
...The continuing chronicles...
Extended Byers Family Health Status Update
OK, brace yourselves, 'cause this is gonna be a long one.


A few months back, I mentioned that I'd tested positive for Crohn's Disease.

Well, my blood test DID come out positive.  But it's only 90% accurate, and both "looksie" tests (the procto-scope thingy and the tiny flashing camera-pill) came out negative.  So, no Crohn's.

Looks like I was just sensitive to my Metformin drug (for diabetes).  So now I'm on a pricey new drug -- Genuvia -- (fighting insurance tooth and nail), and we're working on getting the dosage right.

Also, this Monday I'm going in for surgery to get this stomach hernia I've had for years, dealt with.  Oh, joy.


We have a diagnosis!  Virtually all of Angela's multiple health issues, it turns out, have an underlying cause!

It's called "Fragile X".  Which means that one of her X-chromosomes is slightly defective.  It has a "stutter"; in a few places where it should be encoding new information, it goes into a loop, repeating old information over and over.

Fragile X is worse for males (because it's our ONLY X chromosome), and MUCH worse for females who have BOTH X's "Fragile".  But still, if you go down the list of Angela's various ailments (Fibro, being overly sensitive to stimulation such as light, sound, people, and much more), these are all linked to women with "Fragile X".

As Angela puts it, "now [her] life makes sense"!

This doesn't lead to any changes in her treatment options, but now we know WHY she's so... special.  :)

At any rate, she's getting around 3 hours of warm water exercise and physical therapy every week, and her muscle tone is improving, so yay for a little good news!

Reed's dad: Ross

He's 97.  He's OLD.  And for the Nth time, he's back in the rehabilitation center, where they're trying to build up his muscles so he can still function at home.

(Yes, I know.  He doesn't belong in a rehab center, he belongs in an Assisted Living community -- but neither he nor my mom are willing to consider that, REGARDLESS of circumstances...)

This time, it feels like he may be losing ground for good.  He's starting to not recognize my mom, and THAT'S never happened before.

We'll see... but I'm getting vibes that he may not last much longer.  (He is NOT ALLOWED to DIE until I recover sufficiently from my surgery to make the flight to Houston.  I missed my grandmother's funeral, and I missed my Great Aunt Blanche's funeral, and I'll be damned if I'm gonna miss my own Dad's funeral...)

Angela's dad: Roy

*SIGH*.  So Roy got the "lap band" surgery to help him lose weight.  A few months later, he stopped being able to sleep.  Like, AT ALL.  Over the course of the next three weeks, he started hallucinating, and generally being less connected to reality.

The doctors initially seemed to think the hallucinations were due to the lack of sleep, and the lack of sleep was due to his prescriptions no longer being right for his body weight.  His wife (Angela's step-mom) Shirley went to check him into the hospital to get them to see what the problem is -- but once the papers were signed, they committed him (against BOTH of their wills) to the "mental health unit" (i.e. psychiatric ward).

He spent the weekend there, before they decided, hey, maybe there's a medical cause, and moved him back to the hospital.

(During his stay at the mental health unit, he tripped and injured his foot with the artificial ankle -- by the time he was admitted to the hospital proper, he had a STAPH INFECTION IN HIS BLOOD.  Grrrrr.)

At the hospital, they've experimented with changing his meds -- he's finally getting some sleep -- but the hallucinations and confusion, while reduced, didn't disappear.

After monitoring his mental activity for 24 hours, they now believe he's experienced multiple "infarctions", and had multiple strokes.  (He actually had one, right there in the hospital, while the wires were attached.)

Using his Bi-pap breathing machine (with added oxygen) at night, his Blood O2 levels are fine -- but STILL not so great in his brain.

There's talk now of transferring him back to the mental health unit.  Drugs may or may not improve the symptoms, but it's starting to sound like there's nothing else to be done -- he may have permanent brain damage.  This may be as good as it gets.

Needless to say, Angela and Shirley are EXTREMELY upset.  And we are all just as depressed as we can be.

So, you know, happy holidays and all... we'll be the ones over here in the corner, moping...

Tags: ,
Current Emotional State: depressed depressed

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fair_witness From: fair_witness Date: December 14th, 2010 11:28 pm (UTC) (Link)
Oh, no.

*hugs* I'll let Phaed know.
amaebi From: amaebi Date: December 15th, 2010 12:17 am (UTC) (Link)
I am so terribly sorry for all you're wrestling with, and so admiring of your wrestling.
rickvs From: rickvs Date: December 16th, 2010 12:23 pm (UTC) (Link)

Just because it's expected, that doesn't make it not uncomfortable :
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