Quality of life isn't something I have right now, I have to be honest about this. Some days are better than others, true, but my quality of life has diminished considerably. If only I could feel the way I felt on that first week of prednisone---closest thing to 'normal' I've felt in years! But as fate would have it, there's simply too much going on with my health for one simple pill, or even two, to put me in a healthy, strong place.
So I picked up copies of my labs yesterday and learned a few things. For starters, what I understood to be increased PORTAL vein pressures was actually CENTRAL venous pressure. NOT having portal hypertension is VERY GOOD news! And on the flip-side, that CENTRAL venous pressure increase is extremely bad as it could very well be a result of my heart issues, lung issues, or both. There's just too much overlapping findings here.
Liver enzymes are creeping towards normal, slowly, which is great!
Aldolase is now elevated again.
MCV is elevated again.
BUN/Creatinine ratio is elevated.
Calcium is low.
To the last, I don't understand at all. I take calcium supplements, so I've no idea why my calcium is low now, except that it's perhaps the prednisone. Still, supplements are supposed to keep that from happening.
Aldolase is another puzzling bit of information because it's related to muscle and/or liver damage. But which? My guess is that the doctor could be right in that there's another issue that has yet to be pinpointed and nailed down with a diagnosis---possibly myositis. The muscle weakness and severe lower back pain and cramping when I stand up/walk could be a result of muscle inflammation. But why isn't the prednisone making me stronger like it did in that first week?
One thing for sure is that there are a LOT of really awful symptoms that have gone and not returned since starting the prednisone. I'm stronger in some ways, and weaker in others (depending on which day it is). The one constant is that I still don't feel well, even if I do feel better. It's at least something, right? I'll take what I can get, but I do need my life back.
I've no idea what will happen next, what will be addressed next, or how long it's going to take to feel like a normal human being again. My arms are so tired right now that I have to lean my forearms on the laptop as I type, because there simply isn't any other way I could do it. Yes, it's a very bad day today, and I long to crawl back into bed and just wrap myself in my favorite microfiber fleece blanket. Oh, you've no idea how much I want to do that very thing.
Even so, I'm up, awake, and I can't allow myself to fall into that trap of laying down every time I don't feel good. Hell, if I did that I'd never get up! Still I have hope that with everything going on that someone will tell me what all I'm dealing with here. My blood work will be tested again on Monday, and MAYBE there will be even more improvement with my liver enzymes, and MAYBE with those results, which should come back about a week later, more investigations as to what's still occurring will begin. I know, however, that despite it all I'm told the liver issue is the most important right now, the most critical. And I get that. I really do. But I still need to know if there's something else going on here, or if the AIH is actually messing everything else up.
And I definitely need to find out what the deal is with the central venous pressure, because that appears to be directly related to heart issues, and possibly lung issues as well.
I'm so tired. So very tired. Just so very tired.
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