Well this time around 'no news' wasn't good news.

It's been a pretty crazy few months in our house.

Let me start by saying the boys are doing FANTASTIC... Both boys are thriving... For that we're thrilled.

In April things hit a crisis point for me (mom). I haven't mentioned alot about my own health challenges on here, but as of mid-april, they came to a head and were no longer 'ignorable'.

After Brandon was born I developed severe autonomic dysfunction - my blood pressure, heart rate, digestive system and basically every 'system' that functions automatically in my body stopped working properly.

With medication and regular monitoring I was able to stay somewhat functional but have been disabled for the most part since that time. By December last year I was using a wheelchair for long walks etc.

This past winter my gut pretty much shut down completely.

I lost 30lbs in a few months (and believe me I didnt have 30lbs to lose).

Mid April I finally wound up at the ER in the city weighing 95lbs, with a blood sugar of 1.6 (28.8 in US units). I was good and broken.

For the past year the diagnosis has been 'Autoimmune Autonomic Ganglionopathy' - a condition where my own immune system attacks the autonomic nerves. Untreated, it's progressive and relentless. There is a treatment - IVIG - an IV solution made up of immunoglobulins from thousands of donors - but it is very expensive, and considered experimental for my condition, so it was taking a long time to get a trial approved.

The up side to ending up critically ill in the hospital was I was able to get a trial set up and running very fast. It came down to them wanting to place a surgical feeding tube, or start TPN (IV nutrition), and they all agreed it made sense to try the IVIG before going that drastic route.

It was a shot in the dark - they had no idea if it would work, and if it did, they had no idea how well or how fast.

They didnt know what dose to give me (so they gave me a massive one), or how often (so their doing it every 3 weeks now). But I had some awesome doctors who were willing to give it a whirl.


Then the cool part happened.

It worked.


After 7 years of being so sick, a few glass bottles of IVIG, a bit of time and rest, and one day my blood pressure started going up... stopped dropping when I stood, my heart rate stabalized, my gut started working...

I was inpatient for 3 weeks... 3 long weeks... and then I got to go home... better than when i went in... it was amazing.

It's been slow, but the recovery has been steady... Ive been successfully weaning off the multitude of medications I was on to keep my body functioning...

Every day I am a bit stronger, I have more energy, I'm less fatigued....


It's been an amazing journey, and while its frustrating it took so long to get to this point - now that I'm on my way to better (after being told for years 'better' would never happen) I am just thrilled....

Life is good.

1 comments:

  1. Keely, thats amazing - so glad to hear that your getting better!!!

    Laura

    Laura

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