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Mar 25 2013

The Joy of Being Angela

So, yeah, Angela’s in the hospital.  Again.

In case anyone’s reading this who isn’t a member of CSS, or a former reader of the Willamette Freethinker, some history:

I am the Vice President of Corvallis Secular Society, and editted the Freethinker (our group’s newsletter) for sixteen years, before letting it go dark in January, in favor of this blog .

My wife, Angela, was Treasurer and Webmaster for awhile, and assisted me with the newsletter.

Angela has a genetic condition called “Fragile X”, which means that one of her X chromosomes “stutters”.  Instead of carrying needed genetic information, part of her chromosome repeats “junk” information over and over.

Below 50 stutters, you tend to be relatively functional and undamaged.  Over 100 stutters, you tend to be utterly crippled, in one way or another.

Angela has 76 stutters.

Fragile X makes you prone to many other health problems, and oh boy, does Angela have them.  In no particular order, she has:

  • Kienbock’s Disease — otherwise known as “avascular necrosis of the lunate”.  The lunate bone in both of her wrists is dying and shrinking, resulting in a great deal of wrist pain and no gripping strength to speak of.  Angela had surgery on one arm, where they shortened her radial bone to try and relieve pressure on the lunate.  It left her with a metal plate and screws in that arm, and only granted her a few years respite for her lunate.
  • Keratoconus — An eye disease that causes your cornea to warp into a conical shape, leading to blindness.  Angela has had one cornea transplant, and can now see well through an eye than was previously completely blind.  Her other eye is slightly misshapen, but hasn’t grown any worse and doesn’t presently require surgery.
  • Fibromyalgia — A minor car accident about 9 years ago “activated” Angela’s fibromyalgia, and she now requires massive amounts of pain drugs at all times to avoid the worst of her full-body pain.  Even with the drugs, she is rarely below a “4” on a 1-10 pain scale…
  • Gout — Angela eats almost no fat; she has an extremely healthy diet.  But her body can’t process uric acid, so it collects in her joints, causing even more pain.  She’s on drugs to try and keep the acid levels down, but it still flairs from time to time.
  • Extreme sensitivity — she cannot handle bright lights or much noise.  Too many people around her make her extremely nervous.  In restaurants, she frequently has to take a minute to close her eyes and force herself to relax.  The smallest crumb in bed will fiercely irritate her skin; she is the original “Princess and the Pea”.  Most adhesives (such as in Band Aids) cause her skin to slough off, making the original wound even larger.
  • Water absorption — Last but not least, she absorbs water like a sponge.  She must take heavy diuretics every day, or blow up like a balloon.  Her heart is permanently damaged from congestive heart failure.  And her kidneys are strained trying to get rid of it all…

This last one is what has flared up again.

When we flew to Houston in January for my dad’s funeral, Angela actually did really well.

Shortly after she came back, she developed MRSA (a nasty, highly contagious infection) in her leg.  Her doctor put her on a strong antibiotic that she had taken successfully before… but this time, halfway through the ten-day course of pills, her kidneys shut down and her potassium levels skyrocketed to dangerous levels.  She was literally partially paralyzed from the potassium. (She also started massively bloating with water.)

An ambulance took her to the Albany Hospital, where they measured her potassium at “7.3”.  They kept her for a few days, clearing up the MRSA and drastically pulling down her potassium numbers.  Then they changed up her diuretics and sent her home.

This was about a month ago.

Well, the new levels of diuretics didn’t work very well, and she kept putting on more water weight.  Her regular doctor changed her diuretic levels back to “normal”, but it didn’t help.  We went back to the Albany ER, they shrugged.  Her regular doctor tried boosting her diuretics further, it started to help, but her kidney numbers went crazy, so they had to back off.  We went back to the Albany ER *AGAIN* with almost 75 pounds of water weight — and Angela’s doctor called and spoke to her ER doctor — and they *STILL* told her she wasn’t sick enough to admit.  (Seriously, WHAT THE FUCK?!?)

Her regular doctor started calling her morning and evening, he was so worried.  They were collecting blood samples every other day.  Everything kept getting worse.

Finally her regular doctor told us to go the the Corvallis ER, and he called and spoke to THAT ER doctor.  By now, she had collected over 100 pounds of water weight.  This time, though, everyone was super nice, they admitted her to the hospital at once, and in the last three days, they’ve already pulled FORTY POUNDS OF WATER out of her.  We believe she will be there for another 4-5 days.  They won’t release her until they’ve found a combination of oral diuretics that will keep the weight off, while not frying her kidneys.

She is starting to feel MUCH better.

And we will never again make the mistake of trusting the Albany hospital.

With any luck, she’ll be recovered enough by mid-April to finally start attending CSS meetings again…

[EDIT: I should note that the above list of Angela’s ailments is not complete by any means; it is only what I could come up with off the top of my head at the spur of the moment…]

Permanent link to this article: http://www.corvallissecular.org/2013/03/25/the-joy-of-being-angela/

3 comments

  1. John

    Thank you, Reed, for giving us an update on Angela’s condition. It is good news that she was admitted to the Corvallis hospital and is already doing much better. It will be a pleasure to see both of you at CSS meetings.

    –John

  2. Nina

    Please tell her I’m thinking of her and to call when she feels up to a little company. :-)

  3. Nina

    I hope things are better now. If you guys need anything let me know, and tell Angela to call when she feels up to a little company.

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