Wednesday, June 26, 2013

Hospital Update

So here is what I know as of right now:

I went in because my BP was going from numbers like 165/127 hr 48 to 110/61 hr 120 in a matter of minutes and it was completely making me crazy and both of those were laying down in bed. 

My blood pressure is much more stable, but still no where near amazing. Even after 6 liters of fluid in the hospital. So I'm still going to get my weekly 2 Liters at the infusion center tomorrow, it's the only way they would let me leave today. So I will get 8 Liters total this week! Holy Cow!

The Electrophysiologist they wanted me to see that they kept not releasing me because we were waiting on his consult is on vacation this whole week, so I would have been waiting a long freaking time if they didn't figure that out. 

I would not leave until they made me walk with a pulse ox on so we could see if I was really stable enough to go home. My HR went up to 130 but stayed there the whole time and did not fluctuate, so we are considering that stable.

I am still getting VERY symptomatic when I eat so we now have the eating regular foods in a controlled setting documented and know we need to work on that further. All the docs are on board with the NG tube trial at this point...whoopee...not.

I am talking to rheumy tomorrow about not tapering the lyrica or any other med anymore because I obviously cannot handle it. 

We have no idea why my migraines have suddenly appeared in full force after 3.5 years, but they are back with a vengeance.

To try to fix the migraines and the tremoring the neurologist that I thought I hated and turns out to be super awesome started me on Topamax yesterday (a very small dose) and within 2 hours my hand completely stopped tremoring for the first time in 3 years and hasn't started again since. The migraines are still extremely painful, but she said it was gonna take a while for it to work and probably wouldn't work until we tapered me up to a higher dose, but we are being very careful adding this med in due to my sensitivity with meds. 

Due to the fact that I obviously need a lot of fluids since I just had 2 liters Thursday, 6 liters Monday-Wednesday and am getting 2 more tomorrow my GP is calling the cardio about making my fluids more often and getting a port very soon.

The endocrinologist seems nice, but obviously doesn't know adrenals very well because he said my second stim test was normal (despite my BP dropping to 84/51 and heart rate of 47 last night) and when asked about why I'm reacting if it's normal he told me because some people don't like to be stressed. However, when I got my printed out labs upon discharge my baseline was 18.8 and my 60 minute was 24.1. Which means it only rose 5.3 points the whole test and it's supposed to at least double if not triple if you are responding correctly which means it should have at least been 36.4. However since my baseline was "within normal limits" it didn't flag as abnormal and he called it normal. It obviously isn't normal. My adrenals are obviously not working. I will be looking for an endo that realizes this soon. ;)

I got copies of all my labs and all my vitals the whole stay to bring with me to my new cardiologist appointment next week :)

I am overall still feeling really lousy but happy to be in my bed with my puppy. 

Love y'all :) ♥

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