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Its been a good 7 months since Ive been here...

Not sure if anyone remembers me but hey Ill update you anyways...

Last fall I had my PFO repair (heart defect that for whatever reason was shunting blood and causing my O2 to drop - I was O2 dependant most of last year because of it) and it was a roaring success - at least as far as the O2 stuff goes - Ive been off O2 since I rolled out of the OR!

Very happy with not lugging oxygen around!! :lol:

Everythign else has kind of fallen apart though.

After the heart repair my cardio and I decided to attempt a verrry slow wean off the florinef - just to see if I could get off it.

2 weeks ago my blood pressure in clinic was 80/50 standing. (thats a drop from 115/70 sitting)

last week it was still 80/50 standing and we bumped my florinef dose up again.

today it was 77/50.

yea not going well.

I feel like crap, obviously.

ive started on salt tabs (6000mg a day) and midodrine as well as pulled out the compression stockings for the time being.

What has us particularily concerned is that in the past my drops were always related to a crazy high heart rate (why i was classified POTS). Lately my heart rate isnt shooting up, which takes it out of the POTS category and puts it squarely in the 'autonomic neuropathy' category... and its officially progressing.

So not terribly happy with that.

Im off to see the mito specialist for a repeat biopsy and a consult - were all pretty much certain he will confirm I have mito. my son has confirmed mito, and it appears they have isolated the gene responsible for it in him and I (maternally inherited MtDNA defect), but my understanding is more testing will have to be done before they can make that call.

Its really weird trying to switch from 'mom mode' to 'me mode' as far as doctors go. the past several years I have really let my own stuff fall to the wayside as we dealt with our sons issues (which are unfortunately progressing too fast for our liking). Its hard to step back and actually deal with my own stuff.

anyways - you will likely see more of me here over the next while... im sure im in for a rough year as they want to figure out where things are nerve wise - its been years since ive had any neuro testing done, and things have clearly progressed in that department.

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I am sorry. Welcome back though. Can your sons' specialists point you toward good docs for you? I would think that they would be the same since it is a genetic disorder. Switching out of "Mommy-mode" is very hard, you tend to push yourself because your child need you and of course you suffer for it, but then you don't have time to suffer since you are Mommy! It is a nasty cycle and I pray that you have a good support network. Come back to vent, scream, cry, question, whatever...we are here to support each other!

((((((((((((((((((((((((supportive hugs))))))))))))))))))))))))))))

May healing find you!

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