So I Can Use My Arm Again WHEN???

      No Comments on So I Can Use My Arm Again WHEN???

Okay, my arm's not actually in a sling but I feel like it should be.

It’s been exactly 24 hours since my PICC line went in and my arm feels like crap. Every time I do anything that doesn’t require my arm to be completely straight hurts like a mofo.

Also it bleeds like crazy. I don’t mean gushing, but definite oozing. This morning when I got dressed it bled so much that it came out from under the dressing and ran down my arm. THAT was fun. It ran out along where the tubes protrude from under the dressing so it’s not exactly an airtight seal but I think as good as it can get without melting something on my arm. :).

They did change the dressing today and she said it looked good. I’ve been doing little stuff since she left and no more bleeding so maybe it’s closing itself off a bit. They’ll be changing it every week and the connector tubes too. My nurse also said I only have to change the tubes every 3 days, not every 24 hours like they told me initially.

Ate some today, but never enough. We will see how it goes with the fluids after a few more days.

It definitely still throbs but I think it’s a little better than yesterday. It actually felt best after I slept on that side some this morning, oddly enough. I think I was tensing it the rest of the time, which is probably why I slept poorly last night.  My nurse told me it will take a few days to clot up around the insertion point and stop feeling like someone shot me in the arm. But how long exactly? I asked my friends in an online hyperemesis support group, and here are the responses:

  • “I think it was about a week and a half to two weeks before I felt fully comfortable using my arm ‘normally’ again.”
  • “My PICC has been in for 3 weeks and doesn’t hurt as much as it did, but I’m still absolutely aware it’s there, even lifting a dinner plate. Try not to use the arm as much as possible while it’s in. The first 4 days were the worst, pain wise!”
  • “It should start to feel better in about a week. :)”

So I guess we’re looking at a week or more for full recovery. Good times.

Time for a PICC Line?

      No Comments on Time for a PICC Line?

I had my third ER visit on Sunday after my ketones were at 80 per the test strips Alere (the home health company) provides and my weight had dropped another 3 lbs. They gave me 2L of fluids with glucose and 4 mg of Zofran (on top of my 1.4 mg/hr with the pump AND the 1 mg bolus I’d had on the way to the hospital) and sent me home better hydrated but feeling about the same.

But yesterday I felt amazing! I ate! Real people food! And drank! Whole glasses of water! And DTD with the incredibly patient Daddy in Training for the first time in weeks.

And then this morning I woke up and felt like crap again. I always feel amazing the day after they jack me up with fluids, but the next day it’s like it never happened. I just can’t get ahead. I can’t even maintain! I’m still losing weight, I can barely eat, and any liquid splashing around in my stomach is torture!

I called my Alere nurse today and told her I just cannot keep doing this. They already had to get a pharma consult to get me on the dose I’m at on the pump, so I’m guessing going up much more isn’t a good option. Plus I keep having to go back to the ER, at $150 a pop when Alere is supposed to be able to do my fluids and insurance is already paying for it — but they can’t do it on an emergency basis, just as part of a regular schedule of care. Gee, that’s helpful.

So now I’m waiting for her to call me back. She’s talking to my doc about putting in a PICC line so I can have fluids all the time and become a functioning human being again. Concept, right? But I’m a little freaked out about the PICC line. Should we try regular IV fluids first or go straight to the PICC? Will I have the pump AND the PICC or just the PICC? Is this really a good idea?

I know it’s gotta be better than driving 30 min each way to the hospital and dropping $150 several times a week, but I’m still kind of freaked out. Guess waiting is the only option right now…