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6:37am January 15, 2015

ANOTHER central line?

It looks like I’ll eventually (provided my stomach bleed doesn’t prove to be too hazardous to the procedure I’m undergoing) be getting a second central line.
I already have a Bard PowerPort, as most of my followers already know.  That starts up near the jugular vein and continues down to my heart.  This removes the need to find veins for IVs and blood draws.  I love this thing.  It doesn’t even hurt, not as much as getting poked ten times in a row does.
But this central line does something different.  It would be used in a procedure called plasmapheresis which is basically like dialysis only for blood plasma.  They’d be taking out various antibodies and seeing if my myasthenia symptoms improve.
I hope it isn’t as much of a fiasco as my IVIG was.  That was when I got aseptic meningitis and a stay in isolation at the hospital.  Everyone was incredibly nice and considerate, but hospitals suck, and hospitals with the worst headache of your life suck even more.
They’re going to be doing all kinds of tests before they even clear me for this. Including checking my stomach bleed to see whether it’s bad enough to cause nasty levels of internal bleeding on anticoagulants.  I can’t hazard a guess either way, especially when I’m used to seeing 30 little curled-up blood clots plus some liquid blood come out of my g-tube at times, and knowing that’s actually normal enough not to worry about. 
But I don’t know what would happen if they actually looked in there and found out, because we don’t even know how big the hole is.  (It is associated with the time my tube pulled out, and gets temporarily worse every time my tube partially comes out and needs shoving in again.  There are these things kind of like prongs holding the tube in place, and I’m sure they scrape against whatever hole is in he side of my stomach wall.)
If this treatment works it will tell us definitively that it’s autoimmune myasthenia gravis and not congenital myasthenia.  Given that it runs in my family and we both have abnormal single-fiber EMGs but not abnormal antibody tests, I could see it going either way.  There’s also, just to make things even more difficult, hereditary autoimmune myasthenia gravis, out there.  
But anyway, if it’s autoimmune, there are treatments.  And if it’s not autoimmune, I can go off this damned CellCept which I’m still blaming for the infected cat scratch on my leg.  Like I’ve had badly infected deep cat bites before, and I’ve never seen anything like this cat scratch.  It’s like it became round, nickel-sized, with the consistency of cheese pizza kind of, with red radiating out all around it.  At first the red was at least three inches long on every side.  Now it’s just an inch to less than an inch.  So I think my doctor was right to choose the topical ointment approach, especially given my higher rate of antibiotic usage in general and the last thing I need being a superbug.  
But having two central lines will just be weird.  They’ll take the new one out if it doesn’t work.  Not sure what they’ll do if it does work, they told me I just need to look it up in my case manager’s notes today.
And if it is autoimmune – note to body: please stop attacking yourself.  I learned not to slam my head with my fists until I went blind or couldn’t walk straight or passed out, you can learn not to attack yourself too, right!?
Anyone with myasthenia, myasthenia gravis, or other autoimmune diseases have any useful information to share about this procedure?
Notes:
  1. withasmoothroundstone posted this