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Sunday, February 22, 2015
I went through my first IVIg treatments for this SPS thing on Thursday and Friday over at Duke. It was both interesting and boring at the same time. Now, we wait … of course.
Bob insisted on a picture, which is kind of funny because what do you think he did for the first part of the day?
Yup, head buried in the iPhone. I refused to let the TV be turned on the entire time.
I thought I would end up getting a lot of reading done, but I actually got no reading done. The way that the IVIg schedule works is that every set time period (30 minutes a couple times, then maybe an hour, etc.), the infusion rate changes and someone has to come in and fiddle with everything. Plus, that darn blood pressure cuff inflates every fifteen minutes on the dot. Everyone else’s infusion machines in the clinic are beeping to let the clinic staff know that their infusion rates need changing. And, I had awakened with a little more left lower back pain than what I’d been having, so I had taken some pain medicine and really didn’t feel like doing much more than chatting with Bob about stuff … really, just stuff, like nothing of importance.
So, they take you in and get you all hooked up to everything.
They gave me some premeds that my doc had ordered, waited for about a fifteen minutes, and then they started the infusion and the monitoring. My infusion on the first day took about five and a half hours. And, getting things started was a little interesting as I am not the best patient when it comes to sticking needles in me. The first try for the IV access resulted in the whole set coming out when I jumped (I gave fair warning that I was a jumper). Okay. Take two worked just fine and we were on our way. I learned to warn clinic staff that I’m a “jumper” when a similar mishap in a lab once caused a rather impressive gusher that made one of the other waiting patients pass out and caused a mess in the lab that required all kinds of never-before-used protocols to clean up from spills, etc. Now, I just say, “Just so you know, I’m a jumper, a pretty impressive one.”
I did not seem to have any problems with things on the first day except that my left back pain got even worse and I started to get an ever-so-slight headache. They gave me the coolest heating pad for the back pain – it just crushes up to activate and stays really hot for hours. And, thankfully, the headache never really came to be, so to say. I did get pretty tired, though, like sleepy, exhausted tired. The rest of the evening is one huge blur. I can’t even remember if I ate anything for dinner. I happen to know that I did not because I keep my blood sugar log thingies, but I would not have been able to tell you if I had or not. I also know that I gave myself two extra units of insulin at 1:00 am because of a high blood sugar, so it’s a good thing I skipped the whole dinner thing. No idea what Bob did about dinner, none, nada.
Well, the sun did rise on Friday. The internet was on the fritz at home. My cell phone was having its own set of problems. It was 7 F outside and our pipes were frozen. Nice. Off to the hospital sans showers.
We got the infusion set in successfully on the first try on the second day, but there was much discussion and debate before it was decided where to place it. And, then, they went to give me my premeds and I realized that I had forgotten part of my regular meds at home … and it would be too long of a day to have missed my morning dose, miss the afternoon dose, and not know when I’d get home for the evening dose. The risk of muscle spasms or worse was too much, so they had to delay things to call in an order. I don’t know how I forgot that one as it is probably the largest of all the pills I’m on.
They asked me about the lower left back pain and I admitted that it was even a bit worse. So, as I’m standing there with them looking at my back, just as they begin to pull my pants down …
… out pops this gift from my kitty, Holly. Problem solved, I guess!
The second day went a little faster in terms of overall time and in terms of infusion rate. They were able to speed up the infusion a little because I handled the first day pretty well. I spent some time walking laps around the clinic when I found out that I could get unplugged and run on battery power for a little while. That also made the time go by faster. Plus, it was still light outside when we left the hospital and that just does wonders for my mental awareness and positivity.
But, when I was ready to be done, I was READY to be done!
I actually ate some dinner Friday, too. Granted, it wasn’t much – a salad, some cheese and crackers, and (of course) some chocolate afterward. I think the important thing about having dinner Friday was the social place it has in our married life; it was nice to have the regularity of the dinner banter with Bob about various things, some important, some not, some intellectual, some incredibly silly.
The plan now, I think, is to wait for about another month or so and see how I react to the treatment. Um, that’s about all I know about that. I’m still on the same med schedule … which I HATE, by the way (just on the off-chance that Dr. Juel might by the slightest chance read this).
I think once this second SI joint injury heals up well enough to do at least some jogging, I will be so much happier. The left one this time; for any of those out of the loop, I got all of about a week or two relief after the right one healed up well enough to joggish-run and the left one went – and, yes, I think it would heal faster and better if I was NOT on all of this medicine, wink-wink, nod-nod. I have never been injury-prone and have never had any SI joint trouble, never had something happen in one step, and have never had all of the popping and cracking in my sacrum that I now have at this moment. I feel like my ass is broken. Hell, who knows, maybe it is. Think special thoughts that my ass is not broken please!
Well, that is the very unflattering story of my first round with IVIg treatment.