Tuesday, 2 September 2014

Gilenya first dose

I was so, so nervous. 

Like my-pulse-is-raging-its-way-up-to-108-bpm-and-no-I-didn't-just-run-a-marathon, nervous.

Yes, you read that number right.  And my usual resting heart rate is around 70-75. 


That shows the extent my anxiety has on me sometimes.  Especially health issues.  Well, more specifically, health issues that require a wild gamble of treatment that potentially holds deadly side effects.

My first ECG was normal, so we were ready to start.

So I swallowed that pill.

The highlights of the day were watching a cheesy girly movie that I'd never get to watch at home.

Cough - The Other Woman - cough.

And not having to eat the crappy lunch I packed.

Gilenya is expected to lower your heart rate quite a bit, but assisted by my anxiety I began the day with a nice juicy heart rate.

And as expected, it dropped - as I calmed down, and as the medication took effect  My blood pressure dropped too.  I felt quite dizzy, very cold. 

Vitals were taken every 30 minutes for the day, and we ended with an ECG to check for anything abnormal that would require further monitoring overnight at VGH.

ECG was normal.

Time to take my weary self home - for a warm bath, comfy pajamas, and some chips and salsa.

Still a little dizzy, with some breathlessness, and an odd heavy feeling in my chest.

(all to be expected).

I'm exhausted.  And so happy this day is done.

Pill #2 tomorrow.



  1. Well done Sarah and good luck. You are so very brave xxx

  2. Can't think of anything worse than sitting around all day getting obs done. At least you got to watch The Other Woman! How was it?!? I've not seen it, would you recommend?