The wellaway week.

A week lost in the swirling vortex of life. Super UGH!

Last Friday’s trip to Reston was tough for Chloe. The tilt table test was really hard for her to get through, but she was brave and made it through.

Her POTS  diagnosis was tweaked a bit.  She is still classified as severe.  She also now fits into the hyperadrenergic category.  I have been trying to find something simple to provide as a link for that.  But it is not simple.   I think the most basic thing I can distill it to in my understanding is that in Hyper-POTS both your BP and your heart rate increase instead of the “regular flavor” where the BP drops and the rate increases.  Additionally, there are some genetic distinctions that we’ll have to explore.  We’ll be seeing a dr. for that in the coming months.   In Chloe’s tilt table test, her heart rate jumped right to 174, and that’s pretty big for someone who had just been at rest. I imagine this has much to do with why she feels so bloody bad!   Dr. Abdallah began her on 2 meds– Midodrine and Toprol.  These replaced the others she was taking, but maybe not permanently.  They seem to be helping with her BP numbers here at home, but she is still very symptomatic otherwise.  You must forgive my lack of numbers and specifics in this post.  I am still waiting on the report and I am a bit murky on the memory because here’s how the rest of that day went…

Come home and chase Midodrine all over town.  This is a drug that was off the market for a bit and the specific brand we needed was scarce.  Westminster is where we finally found it.  Got a round in her and… STOMACH FLU!!

Yep, I WISH I was making this stuff up.

This is what the room looked like. The “theme” of the room was TIGERS.  Lots of paintings of tigers.  Comforting?

Then the whole table tilts slowly up to about 80 degrees.

The lighting was very low… but  can you see how purple Chloe’s feet are here?

Ok, fast forward to now.  Chloe was a bit harder hit by the stomach flu than the rest of the family, probably her starting point of POTS.  She is just about back to where she was now.  What is bad about that, is that I am not getting feedback from her that the new meds are making her feel much better.  She is not distinguishing much difference in experience, though as I said, her BP numbers are better.

I am afraid this might be a longish road.

That’s all for tonight.  Wordless Wednesday has been pushed to Friday. Frigiferous Friday  ( which in this case means–bearing or bringing cold)

Do the snowball dance tonight.

Love,

Dawnamarie Snicket