Tuesday, December 8, 2015

IVIG | Round 1 & 2

    I just started my second round of IVIG this morning. I am just now getting around to writing about my first, and now second, experience because the day after my last infusion we moved! Hooray!

    I wasn't able to do much because I found out [the hard way] that my IVIG migraines are triggered by lifting heavy things. I did what I could, but I was blessed with some wonderful friends and family who helped out a lot. We could not have done it without them!

(My boxes of medicine and IV pole. I get boxes like this every month for every infusion)

    So onto the actual IVIG. First of all my nurse is great. She loves Zerah, in fact has a doberman of her own. I was a little worried about getting a nurse who hated dogs but it all worked out. My first IV went it no problem. Sure it stung a bit and was sore, kind of bruised feeling, but we got it in on the first try and it was over quickly. I got to leave that IV in my left hand for three days, then it was time to get a new one. Unfortunately the next one didn't go so well. My nurse told me that she's worked with NICU babies that are easier to stick than me, and that the catheters have a really hard time threading into my vein because they are so deep and so small. Yay me. 
    The infusion wasn't awful but it didn't feel great. Because my veins are so small and the medicine is so thick, my veins kept spasm-ing and aching. The only way I could find relief was to massage my arm for the full 3-4 hours, but then I bruised. It was kind of a lose-lose, but I made it through. I've learned the hard way that you just do what you have to do. It might suck, and it's probably no fun, but it is what it is and there's nothing you can do about it. 
    I went about three days without a headache but on Wednesday night I felt one coming on. I went to bed early thinking I could sleep through it but around 4 am I woke up with a horrible migraine. I took some Excedrin but it barely made a dent. I got through the day with fluctuating pain but by evening it was excruciating again. The pain sucked but what was really worrying me was the risk of Aseptic Meningitis that comes with having the IVIG. The symptoms are neck pain, headache, photo-sensitivity, nausea, fever, and loss of appetite. Of course, all of the symptoms are exact matches for the symptoms of a normal migraine. I didn't have a fever, though, so my nurse stayed on call for me in case I got worse. After about 25 hours, around the time I was considering going to the hospital, the migraine became just a headache and we were no longer worried. I felt pretty off for about another week and discovered that lifting anything heavy really triggered another headache. Not good when you're in the middle of moving. In the end I was just grateful that it wasn't Meningitis and decided to take it easier for my next round.
    I was told that it will take a while to see a big difference, but there was enough of a difference for me to notice! Very encouraging!

    On to IVIG round two. This time I kept myself mostly on bedrest, with the exception of getting things around the house done. Laundry, dishes, meals, etc. This week went much better than the first week. I suppose that the answer really is to just take it easy and rest when your body is telling you to rest. I did get a tiny headache (it didn't even warrant any medicine) for a day or two but that was it. Success!
    What made this round hard was having surgery (I had to have a Laparoscopy) on Thursday. I got home from the hospital, marched upstairs, and got infused. It was a lot for my body to take, but rest will do wonders in keeping your body resilient. Luckily the hospital let me keep my IV in so I didn't have to get stuck twice in one day.
    Speaking of my IV's, I got even more good news (sarcasm). I might have to have a port put in. *sigh* My veins are just so small and hard to get that it's difficult for my nurse to get the catheter in. I'm going to try to bundle up in warm clothes and see if raising my body temperature will help next time. I really would love to avoid a port for many reasons.
    Well, that's about all I have for an update.


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