Download this page in PDF formatPlease note: To avoid confusion with spanned posts, I’ll add updates that relate to today to this post at the bottom, rather than open a new blog post for them. I’ll do the same with a new post tomorrow.
Updated: 10:24, 11:48, 7:53, 10:45, 11:42
So a huge box of supplies arrived last night – a silvered bag full of ice blocks and the meds to go in the fridge, and a frightening array of equipment I’m going to need over the next few days.
I had a great Med-Star Home Solutions home health nurse who went over everything with us, and answered what I’m sure were really dumb questions without blinking. Kudos to her and Med Star Health!
Right now, I’m all hooked up and 30 minutes into my infusion. Here’s the current view in the office:
The complete shebang
The baqsic setup is simple – an IV into the back of my hand (which means it’s easy for me to keep working), hooked up to … well, this:
The "Alien" Egg
Now, officially, this is the container full of Solumedrol (well, 1gm Solumedrol in 100ml of fluid). But you know, the first time I saw it, my thought was “Oh way cool, I’m gonna get hooked up to an alien egg!!
Oh come on guys, you’ve seen my artwork and read my novels, what did you think I was gonna think of that??
In practice, this is a damned neat system. No IV stand, no long tubes, no pumps – the thing just lets the pressure of the blood flowing through the vein to draw the solution down. Once the plastic bag inside is flattened, it’s all done. There is one downside to this system as far as I can tell though – there’s no way to tell if the fluid is actually flowing half the time.
The BIG plus side is this system is so portable I could quite easily be on the Metro and it be running and no-one would notice (not that people on Metro would notice anything to begin with, but that’s another story).
As far as process goes, the next two infusions shoould, from a technical standpoint, go pretty easily. I could set this one up one handed because of the way it was configured, although if the IV had gone into the elbow it’d be a lot more fiddly – like two-person fiddly.
Now for the nitty gritty – how do I feel?
Right now, I get the occasional stinging/burning sensation near the IV site, I guess from the fluid going in. I have a mild headache coming on too, but given my sensitivity to incoming storms, that might not be related to the infusion. I don’t have the metallic taste in my mouth yet, or any of the other effects as far as I can tell like the red face – but this is only 30 minutes into the infusion.
In reality so far, this has been anti-climactic (unless you count the bouncy effect of being hooked up to an alien egg 
) but it’s early days yet.
SO that’s the news for now. Fingers crossed this stays that anti-climactic!
[Updated May 17th 2001 @ 1004]
OK, so first dose is complete. Had to flush the line with saline and the heparin (ugh!) to keep it nice and open for tomorrow’s infusion.
Starting to get some stomach cramps, but other than that the expected side effects everyone mentioned seem to be non-existent yet – maybe they’ll show up later in the day or in a few days, I don’t know.
One thing that came to mind is that this is a 100ml infusion. A lot of the stories we’d found on the interwebs beforehand talked about 1000ml infusions. Not sure if there’s a difference and it’s changing what the effects are going to be.
On the bright side, no metallic taste (yet?) means I’m gonna treat myself to a nice steak with mushrooms 
More as I have it for you.
[Updated May 17th 2001 @ 1148]
Well, still no metallic taste. Steak and mushrooms tasted soooooo good!
On the downside, my blood sugar before I ate was 125 which meant I had to take insulin for the very first time in my life.
I know I’m all about new experiences, but this is getting a little intense. So much to remember in the process of doing the infusions, and now having to remember blood sugar and insulin before meals.
I was diagnosed as pre-diabetic a little while ago, so the blood sugar monitoring isn’t all that of a chore, but the insulin step is new and one I swore blind I wasn’t ever going to have to do if I could help it. I know these are situational blood sugar spikes due to the Solumedrol, but still.
Fingers crossed that how it feels now, in general, is going to be the norm for the rest of this process.
[Updated May 17th 2001 @ 7:53]
So it’s been about 12 hours now since this all started. To be honest, right now it’s very hard for me to consciously detect any changes, except the expected spike in blood sugar. The insulin administration wasn’t nearly as bad as I’ve always feared (a friend many many years ago was diabetic and died because of a mistake in her insulin dosage, giving me a fear of the whole process ever since).
As far as any increase in energy is concerned, I feel like I have a “normal” level of energy. Which might actually be one of the beneficial effects the Solumedrol is supposed to be causing, since I wasn’t exactly at a “normal” level of energy beforehand.
It may also be that the increase in ability to concentrate and the disinhibition effects are kicking in. I think I’ve posted more on my blog, twitter, and the Washington Post forums today than I have in a very long time.
Had a time of being extremely sweaty not so long ago, that came and went. Not cold and clammy sweaty, just normal sweat, so can’t tell for sure if that’s related.
Admittedly, this is just 12 hours into the whole process, I still have 2 more days of infusions to go, and a few weeks of effects to get through, but so far it’s not nearly as bad as some people have experienced. I need to make a note to ask my doctor if there’s any difference between dosage levels and effects when I see him next.
I do want to give a huge great shout out to my husband at this point. He’s been helping from the very start, being part of the infusion process, to helping me with meds and sugar level stick reminders, to dealing with seeing the IV while I was retaping it to secure it better for tonight. This last is one of the things that cements an already rock-solid love for him because he does not like to look at IVs.
If one of the side effects of the solumedrol, insomnia, kicks in tonight, I’m probably going to be posting a lot more
[Updated May 17th 2001 @ 10:45]
OK, something’s not working the way it should – post meal blood sugar was 320+ even after insulin before meal, and it’s coming down damned slowly – maybe too slow. I have a sneaking suspicion the sliding scale for insulin units my doctor gave me for this evolution was based on normal blood sugar/diabetes numbers, but not for Solumedrol, which reduces the efficiency of insulin for reducing blood sugar.
So first stop is a call in to Home Solutions, see if I can talk to one of their nurses tonight. If not, it’s call the doctor in the morning to get to talk to him on the phone, I guess.
This does mean one good piece of practical information may have come of this for anyone who comes across this blog in the future facing a similar situation: If you’re diabetic or pre-diabetic, talk about the Solumedrol reducing the effects of insulin to reduce blood sugar, combined with it’s effects at spiking blood sugar numbers itself, and find out if you need a high potency regieme of insulin, or at least a schedule that will help reduce these effects.
This might just be affecting me (let’s face it, it wouldn’t surprise me if everything were working backwards for me as usual), but they’re certainly worth talking with your doctor about!
[Updated May 17th 2001 @ 11:42]
Got a call back from Home Solutions. It seems Solumedrol reduces the effects of insulin, and oral blood sugar reducers as well. In essence, the Metformin I usually take, and the insulin for the Solumedrol evolution, aren’t able to work as effectively as they would normally.
So I’m going to have to talk to my doctor tomorrow morning (I hope) to get new dosages and instructions to counteract this effect, and to find out if the reduction in their efficiency is going to last longer than the infusion period itself.
The bright side from this news is that the Solumedrol isn’t slowing the effects of the Metformin and insulin. This means I’m not running a risk of having a cumulative effect of lots of insulin sneaking up on me in slow motion.
The annoying part is: NO ONE FRAKKING TOLD ME ANY OF THIS BEFORE NOW!
8 P’s, people!1
This will be my last entry for Day One, I need to try and get some sleep ready bright and early for 8am tomorrow and the start of Day Two.
Shortlink for this post: http://wp.me/p2cbiZ-kv
- Proper Prior Planning and Preparation Prevents Piss Poor Performance, for those of you who’ve never had a D.I. drill that into you by rote [↩]
You always have your twin to call…you should be doing your midnight test as I write this. Love you.