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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.

 

It Get’s Better: My PI Diagnosis

Since we started out the week in high school hell it seems only fair that I finish up the week with a happily ever after. So here it is:

I can’t remember the exact date I found out. Isn’t that horrible? Until now I have never been able to bring myself to even write about it; I write about everything big in my life, but this one day was too perfect to even try to capture. After four years, I’ll finally take a shot at it, but just know there really are no words good enough…some things will inevitably be lost in translation.

It was in May, I know that–towards the rear-end of my senior year. I had been working with Dr. B, an allergist/immunologist, for over a year. We had tried just about everything to find the cause of my unending infections, but just as they had my whole life, everything kept coming back normal. Allergies: negative, except for a couple of foods. Immune globulin count: normal. Vaccine response: normal. Autoimmune markers: negative. But unlike every other doctor before her, Dr. B never gave up. I would come in for an appointment on Monday and she would tell me things she had thought of while researching my case over the weekend. When she was at a loss she consulted with other immunologists. She and her nurse put in hours working with Tri Care to get coverage for super-specialized tests that one of her colleagues did in D.C.

I had to drive up to her Williamsburg office to get the blood drawn and then it was shipped right away to the specialized lab in D.C. Like always I hoped, but after years of disappointment I didn’t really believe anything would come of it. A couple weeks later I had a follow-up with Dr. B early in the morning. I was feeling very sick from another sinus infection and I almost didn’t go, but my parents insisted that I at least go so she could give me some antibiotics. We drove to the office almost without thinking–we had been there so often it had become a routine, a habit even.

I think I laid down on the bench as we waited for her to come into the room; I was sick, exhausted and in pain. I was focused on getting in and out as fast as possible–the blood test results didn’t even cross my mind. When Dr. B walked in she seemed…weird. As I talked to her about the sinus infection she was obviously distracted. She quickly promised me antibiotics and then took a deep breath. Was I crazy or was she fighting a smile?

I don’t remember her exact words. They should be ingrained in my mind, but I think the emotions of that day blurred everything else. The test results were back from D.C. They showed that my B cells don’t mature correctly, which means that the antibodies they produce, though enough in quantity, are crap. I imagined the command center of my immune system being run by a bunch of teenage boys–no wonder I was sick so much. My immature B cells probably couldn’t focus on anything other than food, sports and video games long enough to mount an appropriate defense against invaders…

I emerged from imagining the inner workings of my immune system to find that, oh poop, Dr. B was still talking. Luckily my mom was there to pay attention during my flights of fancy. My favorite doctor in the world went on to explain about Ig infusions–how they would be lifelong, but they could really help by providing my body with some antibodies not produced by teenage-boy B cells. Her smile faltered as she noticed the tears welling up in my eyes. Again mom came to the rescue and explained for me, since my brain had temporarily stopped manufacturing words, that they were tears of joy. I wasn’t crying because I’d have to do Ig infusions for the rest of my life–I was crying because I got to.

Super mom helped me out again as we walked out of the room, she said she’d take care of the check-out so I could go sit in the car. The warm car felt good to my fevered body; I shut the door and it seemed to wrap me in its sun-baked embrace. I sat there and I smiled and I cried. The spring sun made the world beautiful and light. I hadn’t noticed that before.

About a month later, the day before my eighteenth birthday, I had my very first Ig infusion.