Friday, December 05, 2008

yesterday at the hospital...

(every eight weeks I have an IV infusion of Remicade, a drug that suppresses my immune system, so that my immune system is busy with the Remicade instead of attacking my digestive tract. Crohn's is a fun disease. I wrote this yesterday while at the hospital.)

They have weird hospital beds at the APU/GI clinic here. When you move, they adjust, meaning that you shift slightly and suddenly the bed springs to life, emptying some air bladders and filling others under you. It's a little disconcerting at first and is really pretty comfortable if you are laying down, not so great if you are sitting up. When I first get there and I am sitting on the edge of the bed while they take my blood pressure and stuff, it seems I always manage to sit on the edge of a bladder so I am canted sideways.

Getting my Remicade in a hospital is always takes forever. Once in the solution in the IV bag, Remicade has a limited shelf life. And it's expensive. Somewhere around $3000 each time for my dosage. Nobody wants to dump $3000 worth of drugs down the drain, so they have to see the whites of your eyes before they will even consider prepping it.

(And for everything the military gets wrong, they have finally gotten it right for family member health care. I have been hospitalized twice in the last three or four years, had a dozen tests and procedures, had two sleep studies, gotten tens of thousands of dollars worth of drugs and medicines, and I have paid $6 for co-pays at a civilian pharmacy.)

And since it is being prepped in a hospital pharmacy, they get to it when they get to it. The medical facility on Elmendorf is a clinic and a hospital and I think something VA, and they serve both Fort Rich and Elmendorf and all the retirees who live around here. Which means the pharmacy is not full of people just sitting around waiting for me to show up so they can have the honor of mixing up my drug. Dang it. Instead the pharmacy is full of people inconsiderately filling prescriptions for all the lesser mortals. Usually it takes at least an hour and a half to get the Remicade delivered. I am very careful to take a book along and my journal, so that I have something to do. I guess I could watch TV, but daytime TV sucks. And they have free piles of the Anchorage Daily News around, but I can usually read the whole thing, even the sports section, in less than twenty minutes. The Wall Street Journal it is not.

When the Remicade finally shows up, they give me a shot of Benedryl first. Woo. I can literally feel the Benedryl hit my brain about a minute after the nurse injects it. I get light-headed and can barely stay awake. Remicade is made with a mouse molecule, which is kind of creepy. (I really liked cheese before I started the Remicade, I do not sleep in a pile of shredded kleenex, and I do not twitch my nose alot. Thank you for asking.) The Benedryl will hopefully counteract any mild allergic reactions. I personally have had no reactions at all to the Remicade, except for the really good ones like my immune system no longer shreds the inside of my large intestine and I don't feel like I have the joints of an eighty-eight year old woman.

The Bendryl ensures I fall asleep at least briefly, although the fact that they check my blood pressure about six times means it's not a long nap. And since the infusion takes two hours, the Benedryl wears off before I drive home.

Even in Tucson, though, I would get cold, sitting there doing nothing for several hours. It was one of the few times I was happy to step out into that horrible (but dry) heat of the Tucson summer. Going out to the Suburban which has been sitting in the parking lot for four hours, not so great. Especially when I forget to grab some gloves...that's the downside of a heated garage. You can wear a sweatshirt and jeans and be perfectly comfortable when leaving home, not bothering with the parka and the gloves and the hat, because the inside of the vehicle is warm and in the garage.

Then you leave it in a parking lot for a while...and you remember why you have gloves and a hat and a parka. But while the A/C in the Suburban is worthless, the heater is great. It warms up fast and hot.

I think my veins are getting better or I am drinking more fluids or something, because she started the IV on the first try this time. That hasn't been happening very often in the last couple of years, but lately it has taken fewer sticks to get it going. Again, woo. Being an IV pin cushion is not my favorite thing.

But getting a couple sticks is so not a big deal if it means I get my drug. Because life on Remicade is much much better than life without...


  1. Well, I certainly learned a lot --

    But mostly I found out that my friend in Alaska is doing ok. She is taking care of herself and if maybe not liking it is willing to do what has to be done for health's sake.

    Try to stay warm.

  2. Glad the infusion went easily. I do have a hint about the gloves. Keep them in the glove box. Put them on when you get into the car (or out of it as the case may be.)When the car warms up, put them back into the glove box. That way, they are there when you need gloves and you know where they will be!

  3. Glad that's over with for awhile. Better to be feeling up instead of down when your baby comes home for Christmas break. Wish I could tag along in his baggage. Maybe he can bring some snow back to Tucson? Your veins might be getting better, but I'll bet you just had a really great nurse this time. Get her name for the future. Love ya!

  4. Lots of information there! So sorry you have to go through that, but also thankful you found something that works for yoU!!


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