Hospital Update Part 2: The Specialist on the Phone

Whattt....are....we doing? Does anybody know?

Whattt….are….we doing? Does anybody know?

Is this the desert? Is that a vending machine full of Propel Sport Zero in the distance…?


Still in the hospital draining the last few drops of my FIRST bag of saline and not feeling any more hydrated. That could be because I can usually suck one of these bags dry with my miraculous vein vacuum when I’m allowed to. Guess the hospital didn’t quite understand the memo about continuous hydration being a bulk order.

I slept for a few hours after they replaced the bag but woke up with worrisomely low blood pressure (which the nurse refused to believe was happening and took it FOUR times while practically tipping my bed upside down) and having to pee like crazy and simultaneously feeling dry as a bone. Now I’m slowly drinking six cups of cranberry juice, which—doctors orders—are the only “natural” substitute I can use while I detox from my sports drink addiction.

But then these contain zero sodium. Right? So all these are going to do are make me nauseated, force me to crawl around in the corner to find and unplug my IV’s powersource and then pee forever—all while not actually getting any satisfaction and having my teeth stick to my cheeks because I’m becoming less than 70% water.

Ideally, I would like to be shooting a liter of saline every hour on the hour and just staying continuously hydrated for a day and night so I could give my heart a rest.

Tomorrow morning I really, really need to talk to someone about getting a PICC Line.

and this is what my blood looks like in bottle form.

and this is what my blood looks like in bottle form.


Okay! Just got off the phone with my mom, my step-dad and the specialist from New York. So RELIEVED. She was great! And she’s doing some kind of study on patients with POTS & Immune deficiency issues. Interesting, right?

She wants me to be tested for a bunch of things including some retesting for Sjogrens, Ehlers Danlos, Connective Tissue Diseases…She wants me to see a genetiscist and a rheumatologist at the University of Miami…

And completely switched around all my medications—yes, there’s still going to be some in there that I’ve tried before but it’s definitely a new combination and a complete 180 on the dosages.

She also asked for one bag of saline to be delievered over one hour while I’m here, and then said it would be okay to send me home.

AND as for the hydration issues….No port recommended, but she did tell me to switch back to either Gatorade or Pedialyte (something with full sugar and calories) and drink 2.5 L a day with Thermotabs.

It’s obviously not going to be an overnight transformation, but at least I feel confidant about getting out of the hospital and keeping up my fluids. I think she’s the missing link we’ve been searching for. Someone to really ultimately guide all of my treatment. And I’m excited about moving forward with genetic testing. I’ve been waiting for my results from Baylor/Texas Children’s for almost two years now and I can’t wait any longer to get answers.

University of Miami’s hospital system is large and difficult to navigate, but we did it once before so I guess we’ll do it again. Feeling positive, feeling like we’re on at least A path now instead of just wandering idly around from cardiologist to cardiologist without any idea what we’re doing.

Looks like we're leaving the desert, kids.

Looks like we’re leaving the desert, kids.