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What a Bloody Mess!

“What a mess!” I thought. “What a bloody mess!” I wasn’t British cursing–I meant literally bloody.

I had settled into the recliner after getting my infusion going last Friday. Needles in? Check. Pump started? Check. Blanket? Check. Gatorade? Check. Anne with an E? Check and check.

I got caught up in the show, continuously thinking “this didn’t happen in the book,” and cringing in second-hand embarrassment from Anne’s antics. I neglected to check my sites as often as I should have–at all in fact, until I felt a weird trickle running down my left leg. Crap. Crap crap crap. I knew what that meant. I stuck my hand into my sweatpants and felt the left side of my leg where I had placed the needle half an hour before and was greeted by a wet, sticky mess. That confirmed it. My site was leaking.

With a groan, that for once had nothing to do with what Anne was doing on the TV, I got up and went into the kitchen to assess the damage further. Down went the sweatpants. Up went the leg of my bball shorts. Another Mormon curse word or two as I saw that I wasn’t just leaking Gammagard, I was also leaking blood. Rather a lot for such a teeny, tiny hole in my leg.

I’ve done more than 150 sub-q infusions by now. I’ve had leaking medicine, blood in the tube from hitting a blood vessel, asthma attacks, headaches, chills, extremely painful needle sites that rub too close to the muscle, bent needles, needles falling out mid-infusion, faulty tubing–just about everything. But this was the first time I ever leaked blood.

As always before starting the pump I checked to make sure that my needles hadn’t landed in any blood vessels; once the needles are in I pull back on the syringe and if blood comes into the tube, that means trouble–I can’t use that site. I had done this on Friday as usual and it was all clear! So I shouldn’t have been bleeding… but I was.

I talked to an infusion nurse about it Monday. She said, “that’s weird.” (If I had a nickel for every time a health care professional has said that to me…) Usually when leaking occurs it’s because the needle isn’t long enough–it’s not getting deep enough into your fat tissue. But based on my weight and height the nurse was pretty sure that wasn’t the problem, and we were both reluctant to go up to the next needle size–12 mm (yikes).

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This is a 9mm needle

Instead she recommended I try using more sites. For a while now I’ve just been using two, which I know is pushing it. You’re really only supposed to have 15-30ml of fluid per site; with just two I’m demanding each take about 50ml. That’s a lot.

Friday after I discovered the leak, I had to pinch off the tubing and take the needle out of that side, so my right leg had to take about 80ml of fluid. That was seriously ouchy. I should have taken a picture–it was pretty hilariously swollen–but I didn’t. Just imagine an angrily red grapefruit on the side of my leg and you’ve about got it.

So now I have to use a three needle set.

 

Which is fine. I actually used a four needle set for the first couple years I did sub-q, then I switched because I liked only having to stick twice per infusion. I’ve never used the trifurcated sets much because, well, it’s silly but the lack of symmetry bothers me; with three needles there’s always one side with two and one side with only one. It’s weird. But since my skin is done with this 50ml-per-site foolishness I guess my OCD side will just have to deal.

The question is then: how do I decide which side to torture more?… Flip for it? Eeny, meeny, miny, moe? It’s a conundrum alright.

 

Infusion Friday

It’s Friday! That means later this evening I’ll be hauling out the medical supplies and chillin with some needles in my thighs–it’s IG infusion night!

First, to start with I’ll back track a little bit with an update on the whole gallbladder drama–because I know my dozen of blood-related readers world wide are simply on the edge of their seats. I met with the surgeon yesterday and he confirmed it–the gallbladder must go. He explained the operation very well, despite the fact he was obviously on auto-pilot. I’m pretty sure he was thinking more about what he was going to have for lunch than the explanation he was giving me; he says he does about 100 of these a year, so I can hardly blame him. This is my very first one and even I was thinking about lunch! Food-related day dreams aside though, we got through the appointment and I am officially scheduled to be separated from my gallbladder on June 2nd. Sorry to break it off gb, but if it’s any consolation–it’s definitely you, not me.

Now that I am done conversing with my own organ like a lunatic, we can talk about way cooler stuff–namely IG infusions! Seriously, no matter how much I dislike sticking myself with needles and having golf ball sized lumps on my person, the inherent coolness of what I’m doing never escapes me. Not to mention how much better these nifty weekly infusions make my life. Roughly 98.73% better. Roughly.

Obviously I love my infusions, and will therefore write about them repeatedly, so today we’ll stick to the basics: IG stands for immune globulin. Healthy people donate plasma and the immune globulins are separated out. Each time I infuse a dose of Gammagard, I receive antibodies pooled from about 10,000-50,000 plasma donors, so I can get the broadest range of coverage possible. See how neat this is?

I do my infusions subcutaneously, meaning the medicine is injected just under the skin and is slowly absorbed through the fat. My infusions are done weekly, though some forms of SCIG can be done every other week. IG infusions can also be done by IV–directly into the vein–once a month. I’ve tried them all, but the weekly SCIG infusions work best for me in terms of infection prevention and how I tolerate the infusions themselves; typically, SCIG infusions have much less severe side effects than IV infusions. Plus, I can do SCIG infusions by myself at home, while a nurse is required to administer the IV infusions. Some might not like doing it themselves, but I like getting to be the one in control and having greater flexibility in scheduling, etc. Not to mention sitting on my own couch, watching Harry Potter for the 100th time and snacking on something yummy is approximately way more fun than spendings hours in a hospital infusion center.

So enough words. Here are some pictures.

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After an infusion in my tummy–yes those are flying pig pjs. They are the coolest.

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Needle in my front thigh

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Everything prepped and ready to go

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Infusion set up at home

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Me pulling the Gammagard into the syringe

 

Needlin to be Normal- a Blog About…

To start with, let me explain the title of this blog. “Needlin to be Normal” refers to my need for needles. Each week I take a set of 2-4 needles, and I jab em into my skin. For about two hours “medicine”- actually antibodies separated from human plasma suspended in a solution- flow into my fat through those needles, causing a nice big, swollen lump to form. Then I take the needles out, stick a bandaid over the needle-stick and go about my life. One week later I do it all again. I call it my infusion night, aka movie night.

Still confused? Understandable. Here’s the missing piece of the puzzle: I have a primary immunodeficiency. Which in my case, means that although my body produces the right amount of antibodies, it pumps out some seriously messed up ones–so I get sick over and over again with the same things and every little virus leads straight to a bacterial infection. At least, that’s what happened before I developed my weekly needle habit- now with the help of the IG infusions I do much better. Despite my need for needles and my sizable collection of prescription meds, when I leave the house (with my infusion lumps carefully camouflaged) I get to portray the enjoyable part of “average college kid.” Thanks to my infusions, I get to be (almost) normal. Get it?

So that explains the name and a bit what this blog is about, but really this blog is about more than PI or any one illness(and trust me I have a few to choose from)–it’s about trying to live a “normal” life with any chronic illness(es). It’s about wanting to be able to be real about life with less-than-perfect health without the stigma that chronic sufferers so often get stuck with. It’s about showing that you can be sick without being “the sick one”–that your illness doesn’t own you–that my illness doesn’t own me.

Really I’m still figuring it out. I definitely don’t have all the answers. I’m not starting this blog because I think I know it all. I’m starting it because I want to share the adventure of figuring it all out–the ups, the downs, the loop de loops–with others also riding the crazy chronic coaster.