Inpatient week 2

Nothing much eventful this week... don't even remember much of what happened that's how uneventful it was... up until yesterday.

So my first 4 plasmapheresis treatments I felt pretty confident about. Of course I was nervous getting started, but my gut feeling was everything would be ok. Yesterday, the day of my 5th treatment, I had an uneasy feeling, that sense of intuition. I tried to ignore it but clearly it was right. My blood pressure was normal going into it and I started getting the tingling I've already experienced so they upped the calcium as usual. But I started getting really tired... I mean so tired even though I was watching a movie my eyes were closing, and I can never nap during the day. I was also feeling pretty lightheaded. I didn't think much of it since these symptoms aren't really out of the ordinary for what I experience. But all of a sudden the tech said he's going to lay me all the way down and raise my feet. I asked if everythings ok. He said my blood pressure dropped quite a bit. So he did that and he started testing the blood pressure more often but it wasn't going up. So he lowered the rate of treatment, still wasn't going up. He gave me fluids, still wasn't going up. So he had to completely stop the treatment and thank God it then came back up. So he started it back up and kept it very slow. Oddly enough I wasn't too concerned even though it was pretty scary. Afterwards the tech said to me he's been doing this for 11 years but I had him scared for a while there. Yikes. But hey I made it through! I think the worst part for me was because we had to stop and go so slow I was dying to get to the bathroom... drinking as much water as I do is not fun during these treatments haha.

At least I had an awesome. It was my second time having him. He asked if I'm Puerto Rican because of my last name, because he is... I had to laugh because I'm about as German looking as you can get. So that broke the ice and got us talking and he just said so many words I needed to hear. He reminded me of one of my favorite guys at the rehab hospital in San Antonio. There are just some people I swear God places in your path for a reason. And it's just so crazy how you can connect deeply with people you just meet. To me it feels like a refueling... someone says what I need to hear at that moment, reassures me or redirects me, and I'm off to go again. So tech-thank you.

On top of that yesterday, my afternoon was just a joy... not. My regular neurologist came in (she works out of the same hospital but has another doctor following me here). She decided she wanted to do another nerve conduction study/EMG. The first one was bad enough but this one was slightly different in that you get shocked multiple times in one place, and one needle in one muscle for like 45 minutes while having to move/flex that muscle. Painful! I remember during it I wanted to scream at the top of my lungs... the pain wasn't THAT bad... but I wanted to do it to freak her out and to make myself laugh. LOL. I contained myself and didn't do that though. If she ever puts me through it again I think I will. My parents were in the room the whole time and when I was done I asked who's next. No one volunteered but I'm not surprised.

She wanted to do this because unfortunately once again I am not responding very well to treatment. The point of the plasmapheresis was to boost me up for the surgery. The line placement set me back so I have had improvement since inpatient... but I'm only at the point I was at while at home, possibly even slightly weaker. No one, including myself, really knows what to think of this- why I'm not responding. So basically she wanted to prove for the billionth time that this really is MG. Well yet another test was positive for it and yet again it was reconfirmed. But yet again there is still the question of- is there something else out there yet to be found. I think they first want to get me through surgery and then go from there. So she decided to add one more plasmapheresis treatment.

I just finished my 6th treatment about a half hour ago. This time they had me lay down from the start, gave me some fluids to begin with. When I dropped to 88 over 50 she stopped it before it could drop lower, gave me more fluids and once I got back to the 90s started again. It was going alright then until the end, she gave me more fluids and I looked to be ok... she even said "You did it Heather! Wooo wooo wooo! No crashing this time!" LOL but when everything was detached and my blood pressure checked for the last time it was 86 over 46... those are the numbers that scare me. So once again feet above my head. At this point we have it back to 90s over about 50, but my body seems to be saying stop doing this to me.

This tech was awesome too. She was shocked and impressed at how great of an attitude I have. You know, I love when people tell me that? I love it because never in my life did I hear that until within the past 9 months. Things often seen as negative can with effort be turned into positive. But I attribute my change of attitude to God. It's not quite anything you can put into words but if you have it you'll know it. And if you don't, I'll pray that you will.

Unless I hear otherwise, this will be my last pre-surgery plasmapheresis treatment. As of now, the plan is for line removal tomorrow (God, please don't let it cause as much pain as placing it caused). And if I'm stable for a while after removal they will discharge me tomorrow... just in time to spend my birthday at home and a couple more days in a more comfortable bed with a regular shower... to return for surgery on Tuesday. Of course, I never hang on to any words anyone at a hospital says because plans change so often.

In 5 days I will have a robot inside my chest. That's a pretty exciting way to look at it right?

Keep calm and carry on.