Just posting to say I'm still home. I've had my most violent seizure ever less than 48 hours ago. I was in bed, thankfully.
My heart has been putting me in trouble since then. I'm getting a bit better tonight, but have been in tachycardia all the time even at rest or when waking up. I'm below 120bpm when standing up today, which is a huge win already...
I'm not as much in pain otherwise I'd have been to the ER, but it's still really bothering and tiring
My oxygen sat is doing yo-yos to deal with tachycardia and it's really not going to be possible like this.
Having seizures a few times daily again.
Iron supplements are causing a gastric and digestive mess, despite doing everything I can to avoid it.
I just can't wait for a transfusion instead... Waiting on Monday to call my pulmo and see what we can do this week. If no room's available I'll go to the ER during a "tachycardia moment"