I’m back, like an attack. Or with one anyway.

16 02 2010

OK. Here I am. I’m back.

Truth be told, I didn’t write for a while because there just wasn’t too much to write about, porphyria-wise. That, and I stayed really, genuinely busy during the holiday months. I know, I know. No excuse for leaving my loyal readers in the dark. I do apologize for that, but I’ll try to make up for it now.  (And, I’d also like to throw in that our internet has not been working properly for the last few weeks, making it very difficult to do anything online, but after countless hours of phone tech support and two new routers, I fixed the problem. Just for you.)

So, like I said, I stayed really busy over the holidays. Too busy, in fact. I found myself constantly teetering on the edge of attack-mode. I played a game of pushing myself really hard, then crashing and trying to rest up and do absolutely nothing for a couple of days to ward off an attack. Not the greatest strategy, I’d find out.

By late December, I’d weaned myself off morphine. That was a HUGE accomplishment. I was in no way addicted psychologically, but holymoly, was my body hooked. I created a very calculated and slow weaning schedule, and stuck to it, but not without feeling like a heroin addict in detox. (I even smeared black eyeliner under my eyes and didn’t wash my hair for two weeks, just to look the part.) I had headaches, night sweats, muscle spasms, nausea, and worse of all, the all-over heebie-jeebies. My body was in constant motion. My muscles felt like they were itching, and the only thing that lessened it would be to shake or kick or punch the air. It made for some fucking awesome bedtimes for Eric. I begged him to give up and sleep on the couch until I was through it, so he could actually get some sleep, but being the good supportive husband he is, he stuck by me. Somehow. I think he just has a secret fetish for junkies.

So I coasted along, staying somewhat healthy, getting back to the gym and working out pretty hard… And then a couple of weeks ago, BAM.

I felt the ab pain coming on for a couple of days, but I tried to ignore it. I decided that mind-over-matter was the way to go, just because I didn’t want to deal with another attack in the midst of both of us being unemployed and trying to file for disability and Cobra and unemployment checks… The paperwork for government assistance has gotten so intense that I’m now using it as toilet paper when we run out. And, frankly, I knew that being sick would mean more paperwork to drown in, and it was just too much to deal with. But by the time I was leaning over the egde of the bed barfing into a trashcan (that Eric had insisted on placing there after I kept complaining of having “that queasy feeling that doesn’t actually lead to throwing up”,) I gave in and admitted defeat and headed to my doc’s office.

So, it just so happened that my primary care physician, the AWESOME Dr. Lea LaPlace, had recently mentioned to one of her hematologist friends, Dr. Bremer, that she had a patient with porphyria. And Dr. Bremer said, “Yeah? Me too.” Turns out she’s been treating someone for a while, ordering weekly maintenance hemetin infusions for her, so they schemed and decided that Dr. Bremer should take me on as well. When I walked into Dr. Lea’s office to tell her I felt an attack coming on, she told me that lucky for me, my timing was good, because she’d found me a new hematologist with hemetin. This was really, really good news.

She called up Dr. Bremer to tell her it was showtime. This was on a Friday afternoon, and Dr. Bremer told her she couldn’t see me until Monday, so I had to go home and maintain the attack until then. I was OK with this, since I still had a cabinet full of morphine, and Dr. Lea told me she’d alert the ER in case I got to the point that I couldn’t hold any food down at all, so that I could just pop in and get a glucose IV. Luckily, I didn’t get to that point. Good thing, since this all happened the same weekend that Portsmouth had 12 inches of snow, which hasn’t happened, um, ever.

This is your brain on drugs.

Getting my first infusion of the week. Just glucose and dilaudid.

I stayed in bed for the weekend eating nothing but potatoes, rice, and glucose tablets. And morphine. Monday didn’t come too quickly at all. I stumbled into Dr. Bremer’s office, seriously on the brink of about-to-lose-it. She sent me straight back to the infusion room, and hooked me up to a glucose bag and some dilaudid. The narcotic helped my pain situation a great deal, but I barfed my way through the treatment. Cute. She then called Norfolk General Hospital to set up my hemetin infusions. The plan was to get me in for four days in a row of infusions to halt the attack, and then start on weekly maintenance infusions, to continue for as long as I need it. In other words, potentially for the rest of my life.

The next day, a Tuesday, I went in for my first hemetin experience. And what and experience it was. Eric drove me to the hospital and we pulled right up to the front door and took advantage of the free valet parking. He stayed with me the whole time, since I was sick and pukey and drugged. We walked the maze to the back of the hospital to the infusion center: basically a big room outfitted with reclining lounge chairs, each with its own TV and TV Dinner Table. And complimentary IV stick.

They started with the glucose, which was set to drip for an hour, and they told me they’d call and order my hemetin from the pharmacy. They have to wait and order it after I get there, because once the pharmacy mixes it up, it has to be administered immediately. And the plan was to let me have about half the glucose, then stop and give me the hemetin when it was ready, and then give me the rest of the glucose. Well, before they ordered the stuff, they had to take my medical history. And when they posed the question “Are you, or might you be, pregnant?” I couldn’t say definitively that I was not. I told them I was probably not, but that’s not good enough, apparently. So there was a pregnancy test ordered (which happens to be the running joke between Eric and me, that everytime I see a doctor, the first thing that happens is that I get a pregnancy test,) and they had to call Dr. Bremer to find out what to do in case it was positive, which it wasn’t, but the point is, they lost precious time, and by the time the hemetin got to me, there was no glucose left. I didn’t know it at the time, but that would pose a little problem.

You see, the hemetin arrived, and what I saw absolutely floored me. It was a big glass jar full of black, thick, frothy liquid. It left a greenish tint on the glass. It made me throw up in my mouth. They had a decent IV in, in a pretty good vein. But. Once they started the sludge, my arm was on freaking fire. It was horribly painful. My very kind infusion nurse wrapped my arm in warm blankets to try to help, and Eric dumped dilaudid pills down my throat, but geez laweeze. Crazy pain. And the problem with the glucose being gone was that there was nothing to flush the hemetin through my veins after the infusion was done, so it just pooled in my arm, and I went to bed that night feeling like I’d lifted cars over my head.

Second day of infusions, pre-hemetin.

Hemetin nasty

That vile you see on top of the IV poll full of black guck is the hemetin being pumped into my vien. Mmmm.

Hemetin tube

...and there it is. That tube is not a black tube. It's a clear tube, with black foamy pudding in it.

The next day, the timing was better, and I got a good 30 minutes of glucose after the hemetin, and of course, they used the other arm, so it wasn’t AS bad, but it was still bad. It became very clear that this set-up just wasn’t going to work. For anyone. The nurses had a harder time each day finding a vein to use, and I had a harder time not punching them in the face while they looked for the vein, and my arms were turning into swollen masses of lumpy, veiny, hard, blue, hot pain.

My infusion nurses had a solution. One that my new other-girl-with-porphyria-friend utilizes, but is not without great risk. One which I’ll tell you all about in tomorrow’s post. And I’ll explain how I met said friend. Which I’ll write as I go get my weekly infusion.

I’m tired and going to bed now. But I promse, it gets interesting and kind of gross, with awesome graphic pictures.

Good night for now, folks.

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