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Wednesday, April 25, 2012

Early Morning Rant of a Heavily Medicated Person

So my right thigh has doubled in size.
I'm on this medication called Remodulin, and its one of my main lifelines. The purpose of the drug is to enable easier breathing and I can definitely tell its working fantastically. But its a subcutaneous medication (which means, basically, that I have to have it continuously) and it has a super short half life. If I am disconnected from it for longer than about two and a half hours, I have to check into the hospital to restart it; the drug is too dangerous and painful to just pick up where I left off. A dangerous amount of Remodulin is being pumped into me at a ginormous rate of 0.04 mL an hour. It works great, but I'm not gonna lie, its painful. Everything in my body is screaming NO except for my lungs. Breathing wins over pain, but then awake wins over sleeping. At least I can have a snack since I'm up.
Okay, back with my snack. Nom nom nom.
You know, it takes a while for the pain from this drug to subside from excruciating to tolerable. The docs and I try to keep one port active for as long as possible, and this one has lasted since January. I can't complain, that was a good run. But the adhesive wore out, and last week it just went kaputz. So I went over my options for the next site and remembered in the stomach was bad. Every time I would breathe or move it hurts. So I thought, I'll try the thigh. That way, I can walk it off, kind of like when you're sore from working out.

Wrong answer.

Oy. Within a day, my leg swelled so badly I could barely put pants on. And then it hurt to walk. But this is one of those expensive drugs, one that makes me a million dollar patient, so I'm not going to waste the cartridge full of meds (that would cost me 2 days worth of medication). So I stick it out, being the cheapskate I am, thinking it will get better. Annnnd, no. I'm sweating out the next day and a half. Finally, the alarm beeps to indicate that its time to change. Hallelujah! So I stick the catheter back in my tummy blub knowing it will be sore too, but at least I'll be able to walk without a throbby leg. Its been 4 days but the swelling has finally started to go down.

Now I'm watching the clock, wanting it to move quickly so it will be time to take another pain pill. But at the same time I have taken an anti-anxiety pill so I kinda don't care. Its fun! Or, at least, amusing. I saw a funny post on facebook that said, "If God is watching us, the least we can do is be entertaining."

Entertained, hmm? :)
By the way, sincerely, thank you all for the kind encouragement.


  1. My daughter had to have a subQ port for morphine for several months. It was a bear trying to find places to put the port. I guess I'll have to have you explain it to me in person but I don't understand why you can't pause the pump while you change out the port and then restart the pump? That's what we did with Jessica. We had to change her port weekly - or even more often if the site wasn't working well.

    My heart goes out to you. If there is anything you need... even if it's someone to talk to or vent to, I'm your gal! (((hugs)))

    1. You can pause the pump, just not for very long. Its just enough for the switcheroo, or a quick contemplation of where you want to self torture next. They gave me two pumps so that it would shorten the time in between changes, and if it takes longer than just over 2 hours I have to go to the hospital to re-titrate up to the prescribed dose. But for now, I'm only sore in 3 spots, the original site is still sore, plus my leg, plus the new site. Fun fun fun.

      Thanks for the kindness. I will take you up on hugs the next time I see you! =)