Thursday, January 24, 2008

Med Trials and Gastroparesis Diagnosis

Health update:

The most recent medication I tried did not help my symptoms at all, so we are moving on to my final treatment option.  I received good news from my insurance company last week -they have decided to cover Epogen for me!  Yes, they are approving coverage for the $12,000 a year med.  I will be starting the weekly injections next week.  The Epogen is by no means a cure.  It may relieve some symptoms, or it may not work at all.  I'm very thankful, though, just to have the opportunity to try it and see if it helps.  Epogen could potentially help in two ways.  One, it increases red blood cell count, which will increase my blood volume.  Two, it acts as a peripheral vasoconstrictor, meaning it helps to constrict blood vessels in the arms and legs.  Hopefully the increased vasoconstriction will help my blood to circulate instead of pool in my extremities.
I've been having more and more difficulty digesting food as time goes on, so last week I went to the hospital for a gastric emptying study.  Will took me over in the morning, I donned some rubber gloves and ate a radioactive egg.  I then laid on a bed for two hours while the techs took constant x-rays of my stomach to see if it was digesting food properly.  The results came back showing a neuromuscular disorder called Gastroparesis, which is a fancy way of saying that my stomach is partially paralyzed and digests much too slowly.  Symptoms include daily nausea, feeling full quickly, not getting hungry, abdominal pain, and difficulty maintaining weight.  Gastroparesis is something I've suspected for quite some time, I just hadn't had the test yet.  Confirmation of the diagnosis is yet another sign that my autonomic dysfunction continues to progress. 
This isn't specifically about my health, but for those who may be interested, the Discovery Health channel will be airing a program on dysautonomia next week.  At 10pm on Monday January 28, 2008 the second portion of the Mystery Diagnosis show will be about a woman named Linda who has dysautonomia.  The Discovery Health's website TV schedule says the following:

Mystery Diagnosis
The Woman Who Kept Falling Down

Little Avry Conley of Texas has violent bouts of vomiting and diarrhea from the day he's born; doctors try to ease his symptoms, but they only get worse. Linda Smith experiences strange symptoms, including blackouts, after she hits puberty.

Jan 28, 10:00 pm
(60 minutes)

We do not have television, but a friend will be taping the program for me so that I can watch it later.  (Thank you, Mary Lou!)

Edited to add:
The Woman Who Kept Falling Down has been posted on YouTube if you want to watch it!

Regular Life Update:

Our big excitement last week was a snowfall!  Even way down here in Atlanta we got two inches of snow on the ground.  William thoroughly enjoyed playing in the snow.  He didn't know that so much fun existed!  Every day now he tells me about the snowman that Daddy made.  William decorated the snowman with rocks and sticks.

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