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The Infusion Adventure

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I was absolutely not looking forward to this. It was my first IV steroid infusion for an MS relapse and I had no idea what to expect. So I did what any good member of the online chronic illness community does and sent out a message asking for anyone and everyone to give me tips and ideas of what to expect. Thank you very much Tumblr MSers for being there for me.

From them I learned that I’d be dehydrated, to be wary of the dread “metal mouth” and bring candy and cranberry juice to combat it, and that methylpred can raise your blood sugars so to make sure that candy was sugar-free. And every one of them told me in some way that this was a thing we all get through and that it would be okay.

My three-day infusion adventure (with photos, consider that a warning for the needle-averse) is under the cut.

IV Steroid Infusion Day 1

Wow, was I nervous. After years of invasive tests and massive blood draws, I’m fine with needles. Months ago I started watching the needle insertion, and during my last two draws I watched the entire process from start to finish. I have IVs inserted into the crook of my elbow every time I get an MRI with contrast dye, and I watch those, too. It was a hard-earned victory and it’s mine.

But in preparing myself for my very first steroid infusion, I went looking for information. Photos of IV needles in hands, videos of the sticking, legends of going home with bandages wrapped around your IV so you can feel the needle under your skin for the next 24 hours. Hell to the no. The one time I had an IV line in my hand, I freaked. Sure, I held it together in front of everyone, but I swear to you I could feel that pointy metal shard burrowing underneath my skin. I mentioned this to the nurse handling my infusion and she said to me the most beautiful words I have ever heard: “you don’t have to have it in your hand.”

She might have been compassionate, she might have been competent, or she might just have been scared of the blood pressure I showed up with. (There was fear. There were pre-appointment incidents. 172-over-104. I’ll spare you the googling, that’s high. Especially for someone who is medicated for high blood pressure. We did quite a bit of diaphragmatic breathing.)

The Marvelous Marlene found a nice vein in the crook of my elbow–avoiding the inside of my wrist, because she said those veins are “bad” and “ouch”–and inserted the IV line. They always tell you it will hurt, I never feel more than a pinch. I think I have excellent nurses. I didn’t watch, I was busy breathing deeply and trying to lower my blood pressure before I stroked out. (Seriously, that’s how I think I’m going someday. Upset, upset, higher, higher, BOOM, stroke.) I smelled the tell-tale saline solution at the base of my nose/top of my throat and knew she’d just flushed the line with saline. When I mentioned that she said that someone else told her earlier the same day about smelling it, and we were the first two to ever say that. And here I thought it was common. Maybe other people don’t discuss their weirdness?

Line flushed and clear, I took a Pepcid Marlene provided (steriods can irritate your stomach) and we waited for my meds. I checked my email–and posted a picture of my line to Facebook, as you do–and found a message from MS Nurse Caitlin wishing me well and reminding me to not overdo it, not even if I got a burst of energy after the infusion. Ah, she knows me so well. (I don’t know if I’ve mentioned Caitlin before, but I probably have. She’s my contact, my instructor, my go-to person. I ask her for advice and she lets me know if it’s something we can handle or if we have to call in my MS specialist. She’s also a pretty awesome person who takes the time to check in with her patients. I hope you all have someone like her on your medical team.)

The infusion comes in a clear package (IV bag) about the size of one of those juice packages. I could drink it in a minute, but it takes longer to drip into my veins. I couldn’t decide if four ounces was a lot or a little; Marlene said a little, but I still wonder where even that amount of liquid goes. The human body is amazing. This is where Marlene and I discussed things like “drip to gravity” and the pump that we used to make it drip slower than gravity. (Nurse Sonia says drip to gravity is basically what it says on the tin: gravity pulls the drips down.) I love this sort of stuff. I wasn’t feeling well enough to really get a good snoop around the machine or the IV bag, but never fear, I’ll be doing that tomorrow or Wednesday.

I watched the liquid move down the line and slowly into my arm. It was kind of cool. Faster than I expected. Nurses always warn me, as did Marlene that I would feel the saline or the steroids moving in my arm. Nope. Just, again, a tiny bit of a smell. I got a wee bit of a bad taste in my mouth, but it was mild and I barely noticed it. According to internet wisdom I totally lucked out on that one.

Most of this makes it sound like I was cool and calm. I wasn’t. See above re: high blood pressure and stroking out. Marlene called my husband the yoga master or zen master and that was pretty much his job today: to keep me as calm as he could. He had his hand squeezed, and I am pretty sure I did not break the skin. I hope. But as soon as the steroid was flowing and nothing bad was happening I calmed right down. Maybe thirty minutes later I was finished. Marlene was as startled by the machine’s beeping as I was; she said she accidentally set it to go faster than she intended because it was to take an hour. Doesn’t matter to me, I was feeling fine. I was so calm by this time that I told her she could mummify me with the IV line in and I’d be good to go.

Post-Infusion

I definitely had that burst of energy Caitlin told me about. And I did not over do it, Caitlin! My husbad and I went out to lunch. I had about an hour, maybe an hour-and-a-half of energy before the headache and fatigue swept over me. I seem to forget every time how any treatment or test makes my body react. The MS can’t handle it, the MS wants to lie down. I fell into bed when I got home and that’s pretty much where I’ve been since around 5pm. I read some, slept some, watched some TV.

The one side-effect I really did not enjoy was the sweating and overheating. I don’t know if it was MS reacting to exertion as it normally does or if it was the steroids or both and I don’t care. All I know is it sucks. I’ve been taking Tylenol regularly to lower my temperature and placing ice packs on my pulse points and that helped. I’m finally feeling better. Let’s hope this doesn’t happen tomorrow, but if it does I’ll be prepared.

My hand and arm feel different. I can’t say for sure better, but they definitely feel different.

IV Steroid Infusion Day 2

Today I really tried to be calm. I realized the mood swings started when I nearly burst into tears while just sitting still. So I went to the hospital early and had lunch–I see you doubting this, but my hospital has a great cafeteria and lunch was a salad topped with feta, black olives, cucumbers, tomatoes, watermelon, and tuna and it was delicious–and did a few other things in the hopes of relaxing. Clearly I fail at relaxation because Karen, today’s nurse, asked if my blood pressure was always high. She didn’t give me numbers so I can only hope that it was less high than yesterday.

Karen is obviously a no-nonsense, get on with your business kind of nurse. Don’t get me wrong, she is friendly, open, and helpful, she’s just also very quick. Too quick for me on day 2. I’m sure in the future I’ll appreciate it, but right now I’m still figuring all this out. And something I figured out today was that I need to demand the few minutes it will take to get my tablet, phone, drink, and mints out on the table before she starts the IV pump because otherwise every move of my arm makes the machine beep at me.

Because the side-effects from yesterday’s infusion sucked so hard I asked Karen if we could run the pump for an hour instead of just half-an-hour. With the one hour drip I did get some sensation in my mouth, but as with the saline it tends to be at the back of my throat, under my nose, and it never becomes an issue like what I’ve heard about. Karen informed me I was the first person ever to not complain about metal mouth. I don’t know if that means I’m awesome or if MS has taken out some of my taste buds. But that’s a thought for another day when I have less going on.

The Marvelous Marlene stuck her head in and asked me how I did with the IV overnight. I told her we’re calling that a failed experiment and never doing it again. I was up off and on all night when it would pinch and stab at me. Yes, even while taped down. I sleep with my arms folded at the elbow and that is apparently not a good match for an IV line. Also this morning the miles of saran wrap I covered my mummy bandages with came off in the shower and I ended up drenched. I wanted my arm back and pain free. I’d rather have the two second pinch of inserting the line over 24 hours of pain and annoyance.

Post-Infusion

So far, so good. After two Tyenol to control any headache or fever I’m not feeling either of them. I do again feel like an eighteen-wheeler ran over me, backed up, and did it again so things aren’t all rosy. But no wacky fever sweating is a good thing and I’ll be happy with that any day.

The fatigue came on instantly after this treatment. I feel as if I never really shook it after yesterday’s brief burst of energy and I’m worried I’m going to be this fatigued and in pain for the rest of the week. That would be par for the course for how my MS reacts with any procedures and illnesses so no surprise, really, if I end up beat.

My hand and arm feel better. The numbness is fading. Imagine the weeks leading up to my treatment with my arm and hand feeling the way you feel if your foot falls asleep. Now today they feel less tingly, as if you’ve stretched and moved your foot and it’s waking up. I wonder if tomorrow it will feel the same or if it will “wake up” and the sensation will be gone.

IV Steroid Infusion Day 3

I’m on my game today. Had a good night’s sleep, relaxed in the morning, got lunch before my infusion, took a few minutes to set my stuff up before getting the process started. Marlene was my nurse again today and I like her quite a bit. She explains things when I ask and, even more importantly to me, she asks me questions about my MS because she admits I’m the one who can teach her. A very cool lady, the Marvelous Marlene.

Now, remember I had them remove the IV line yesterday because it hurt so much overnight. Marlene asks me where I’d like today’s line and I tell her to try my left elbow. Apparently I have deep veins there so it was a no-go. She lifts my wrist and asks me about my hand and I tell her to give it a try since it’s the last day and I’m sure I can deal with it. Hello, that is a very painful place to get an IV line, at least if you are me. OUCH. I had my eyes closed, went from sitting relaxedly to rigidly, and was gripping my right hand so tight I was starting to lose feeling in it. Marlene, very concerned, asked me if I was okay. I told her I was getting through this because it was the last day. Then I tried to take some deep breaths and she cheered me on. Soon, though, she had to call this off as a failure because she could not locate the vein. There was blood and a rapidly applied bandage.

I told her to go for the right elbow again if that was an okay thing to do. She found the vein right away and began the insertion. I expected the pinch–which, to be honest, I don’t even think of as something as painful as a pinch. What I did not expect was the pain as the vein leaped away and she had to wiggle the line around inside looking for it. Cue gripping of my left hand until that was as painful as my previously gripped right hand. More deep breathing. More cheering on by Marlene. More everything except for luck.

I don’t know what got into me, but I began watching her wiggle that line around in my arm. I’d noticed before when she was feeling for a vein with her fingers that she closes her eyes and does it all by touch so I’d become sort of interested in this entire process. (You know me, always wanting to learn while undergoing treatments and tests, and always thrilled when I have a nurse or tech who likes that.) Because I was watching I saw her completely remove the line, then stick it back in as she again located the vein. This time it went right in. Marlene had that thing taped down in a split second before anything could move around and ruin all our hard work. At this point she confided in me that she’d worried the day before when I had them remove the line. In the future if and when I need infusions again I’ll have to come up with ways to lessen the at-home pain in order to avoid my vein issues.

I asked her if my veins were among the worst she’s had to deal with. “No,” she said. “Heroin addicts’ veins are worse.” So my veins are better than those of a heroin addict. Good to know?

Once the line was in everything went smoothly. I kicked off my flip-flops, curled up in the recliner, and relaxed with my tablet. It’s honestly a very pleasant experience. I could see the sun shining down nearby, I was comfortable, I had cookies (I’m a planner!), and it’s nice to have to sit still for an hour an not be permitted to do any of those “shoulds” that interrupt your day.

Karen–the Mistress of Scheduling, so I am told, and the third Infusion Room nurse–came in when my IV bag emptied. When she took out the IV line blood spurted out. And then it wouldn’t stop bleeding. (Oh, my veins, why are you so bad?) She wrapped me up with gauze and tape and had me compress and raise my arm for a few minutes before she’d let me leave. While I was doing that, Marlene, who knows I cope by laughter, yelled around the corner, “Save that vein, Tammy! Save it!” See why I like her so much? She took the time to get to know me as a person not just as a chart and she helped me in the way that best suited my needs by making me laugh.

Post-Infusion

My appointment ran late because of my bad veins so I ended up sitting in a traffic a bit to get home. I’m sure that didn’t help things because the side-effects hit me like a ton of bricks. I got home, went into the cold room, took some Tylenol to combat the headache and temperature, and just crashed.

I’ve mentioned before that I’m a very well-hydrated person. I can’t imagine getting through this treatment if I weren’t because I’ve been so thirsty I’ve been drinking double my normal amount. (And, as my MS sister mentioned to me, oh, the peeing!)

I’m still not getting metal-mouth, and even though Marlene called me weird that seems to be my normal.

* * *

It’s day four right now and while I still feel flu-ish from the treatment I noticed that the numbness in my right hand and arm are almost gone. I learned lessons that helped me each day in this treatment and that will help me in future ones. I’m calling it a win.

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Written by tldegray

August 30, 2012 at 10:18 pm

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