Home update

Hi, sorry I'm not in any way peppy right now so this is pretty much going to be getting to the facts and that's it.

Good news- I got discharged home on Sunday. My oxygen saturation was still dropping as low as 79 but of course any time they witnessed it, it was too high to send me home with oxygen. So room air it is. Heart rate still going as high as 150, scary, but what can you do. It's nice to have real food and sleep in my own bed but that's about it. Monday was my first doctor's appointment to see my primary. My blood pressure was scary low again. Tuesday was my Coumadin/Warfarin clinic visit and first INR out of the hospital. 2.6... within range but jumped quite a bit from the 2.0 I left the hospital at. Next check is tomorrow.

Monday I developed this horrible pain but using the word pain isn't quite right I don't think. It was kind of like what sent me into the ER that gave me the PE diagnosis, but different and actually worse. Of course it happened right after I got out of the doctors office. To be completely honest, the only reason I didn't go back to the ER was because I didn't want to put my parents through any more time in a hospital. That's literally the only reason. I should have gone.

Since Monday it's gotten a little better but still there. I joined a PE group on facebook and they all talk about how many times they go back to the ER because you just never know what is serious and what is not and it's better safe than sorry. Now add MG to it and you got a whole new mess. It's weird and I have no idea if it is MG, PE or something else. It started on the left side of my chest then wrapped around my back, then just back, now today its the right side back and chest and less on the left side. It's not constant pain and again pain isn't quite the best word. It's when I take a deep breath or sneeze or cough or blow my nose or laugh. But then there's also the shortness of breath and seems like increased labored breathing.

And then today I collapsed. I was ridiculously stressed by a situation that should in no way have occurred but it did. My body went completely weak on me and I collapsed to the floor. That's the first time that's ever happened. I mean I've been unable to walk before but never gone straight from standing to floor. And then you know when you see a dog panting and their diaphragm literally goes up and down fast, that's what happened with me. It was so hard to breathe for a while. And yes I know I'm comparing myself to a dog. Whatever, I love dogs. So of course now another concern is that in hitting the ground, did I hit it hard enough to cause any bleeding? Being on the warfarin I'm told anything that of course my bleeding risk is high and go to the ER if there is any chance. I didn't really fall and I'm pretty sure I didn't hit hard, and it was rug, but who knows.

My primary said he always says to go to the ER with those symptoms... but again, if it was the absolute worse Monday and since gotten better, do I really have to go to the ER. Better safe than sorry but my other concern is dealing with the hospital again. I absolutely will not return to the one I've been at the past month. So do I go to one of the closest ones- one I know has an MG doctor but was not at all my favorite, one a little further away that my primary is out of and known to be a very good hospital but not very experienced with MG, or go all the way next door to the hospital I came from that is top rated and experienced in MG? Let's hope I don't have to go to any but that's kind of unlikely.

Right now my plan is to try to make it through the night and go to my INR visit tomorrow. It's just with the nurse but if I tell her my symptoms and she sees me and does my vitals and THEN says go to the ER, I'll go. Until then, pray I improve and not fall downhill. Seeing as I'm breathing and typing I think I'm going to be ok, but with MG ok can turn to crisis in a second, and with PE I'm still learning everything so I really have absolutely no idea.

I miss certain people VERY much so and it's hard to go through this without them. God help, I certainly need it right now because in no way can I get through this alone. Strength through faith... unfortunately even struggling with that right now.