written on October 6, 2014
This was a rough weekend. I finished my last drug therapy on Friday – the IVIG infusion. During the infusion I felt fine, a minor headache started, but nothing problematic.
Ah, but then I ended up seeing a movie afterwards (so I wouldn’t have to sit in traffic on a Friday night at 6 pm, and because I’m not able to see a movie again for at least 4 weeks – forever to someone like me), and during the movie, I started to feel weird. It felt like the flu was starting. The feeling passed after half an hour or so, but man, it felt bad while it was happening. I got home and couldn’t sleep the whole night.
When I managed to get out of bed on Saturday morning, the flu feeling returned big time. A migraine was starting and my neck was stiff and achy. I kept getting nauseous and getting chills. Even though we had triple-digit heat in LA over the weekend, I couldn’t go anywhere without a sweatshirt on because of the chills.
Saturday night everything got worse, the headache, the chills, a slight fever and no sleep again. Sunday I felt miserable all day. The headache persisted but wouldn’t get worse and neither Tylenol or Excedrin migraine were helping. I ended up taking some Benadryl before bed and guess what? Still knocks me out. I finally managed to get probably 6, or maybe even 7 hours of sleep. It felt really good. And my urine production returned to normal (my urine output after the IVIG dropped to almost nothing all weekend long).
So it turns out these are all “normal” side effects to IVIG, and they can apparently last for up to three days. I’m so glad the nurses told me that on Friday. They were so concerned about me feeling these things during the infusion that they failed to mention I might get the side effects later. I know, it wouldn’t have made them better had I known they were coming, but I like to at least be prepared if I can be.
Today I showed up at my last dialysis session and weighed myself. 76.6 kilos. Um, where did that 1.5 kilos go (my dry weight has been 78 kilos since August)? My ankles are still swollen with fluid, so how am I so light? Apparently IVIG does not cause weight loss, so what exactly caused me to lose weight this weekend? I know I didn’t eat that much, mostly because I didn’t feel like it. I’m also trying to keep my system somewhat clean for the surgery tomorrow. But still – would not eating regularly cause me to lose 2 or 3 pounds? Come on. That can’t be right. If dieting were that easy, we’d sell a lot less food in America (I know, I know – that’s not how weight loss or gain works, and I also know that not eating is never a healthy option for anyone).
I wanted to call my nurse coordinator to ask about it, but then I thought “wait a minute…what if this is a problem that could potentially postpone the surgery?” So I haven’t called. My weight has fluctuated up and down all summer long so maybe this is just part of it. I also took a diuretic on Saturday night, so maybe I’ve just been peeing a higher volume than I’m used to and I’ve been shedding more fluid. I think that’s highly likely and very probable. I’ll go with that. I’ll ask about it tomorrow morning when we get to Cedars (at 5:15 am – ugh!).
I’m finally starting to feel better – getting some sleep last night helped a lot. I’m afraid I’ll be getting a migraine from this dialysis session though. We’re taking off 800 ml even though I’m already under my dry weight. This fluid imbalance might push me over the edge. Maybe not. My blood pressure is still low – 160/89 (low for me, but another side effect of IVIG is high blood pressure and my systolic has been living in the 150’s or 160’s all weekend). Even though I’m freaking out about the surgery, tomorrow can’t come soon enough. Praying for sleep afterwards… long nights of no insomnia and (hopefully) no bathroom breaks.