April 19th, 2015

Tweet: I’m Home.

I think it’s safe to make this announcement. I’ve been home from the hospital for 24 hours and I’m doing fine. I get to sleep in my own bed!

April 17th, 2015

Back In The Hospital.

I was home for 60 minutes last night, spiked a fever and, returned to the hospital.  Huge bummer, especially considering what it took to get out of here in the first place.  It’s representative of an entire week of annoyance, frustration, irritation, and ridiculous challenges.

April 14th, 2015

This Place Has Some Real Problems. 

Don’t get me wrong, we love the nursing staff here.  They’re great and not at all the problem.  The problems include lack of communication, coordination, and planning ahead.  These are all disciplines that should be mastered by higher-up-types and run downward through the system until they reach me, the patient.

For instance, I had my tri-lumen removed last night at 6:30 (we’ll come back to that timing), which meant I had to be woken up in the middle of the night for labs so a phlebotomist could take my blood.  With my tri-lumen, blood could easily be taken without even waking me up.  This is not a big deal, but it’s a big enough deal to be annoying with all the the other small deals.

And bigger deals, for instance, today, the concentration of my blinatumomab is being quadrupled.  There’s no ramping up to it, it just happens: BAM! Quadruple dose!  And I’m actually okay with that because I’ve been doing great on the drug.  The problem, the quandary that no one seems to want to confront, is that before I go quadruple-steam ahead, I’m supposed to receive another big dose of dexamethasone.  Dex is a steroid that I feared would give me pancreatitis at the beginning of treatment.  I’m not even worried about that now.  I’m worried about how they’re going to get the drug into my body. 

Blinatumomab is not supposed to be stopped.   It’s supposed to be run continuously for 28 days.  That’s just how it is. Before the removal of my tri-lumen last night at 6:30 (we’ll get to that soon), the blinatumomab was attached to a peripheral IV I’d received much earlier in the day (10:30 AM, to be specific–we anxiously waited around all day to find out when I was going to get my tri-fusion removed)(we found out at 6:30).

The problem here becomes that I only have one access port in my body at the moment and it’s being used for a drug that’s supposed to continually run, but I need another drug before it can run any further today.  The dose of the blinatumomab cannot be quadrupled without me first receiving the dexamethasone.   Those are the protocols.

I’ve just been told that I’ll be taking the dexamethasone orally.  Okay.  One problem solved.  Easily.  But why didn’t anybody but my mom and I think of this until right now?

Because timing around here is distorted like it’s some kind of alternate dimension.  I understand there are other patients and I understand that many are much worse off than me.  But when you enter my room and talk to me about my problems, you should be focused on me.  And I should not be made to feel bad about this.

Yesterday, my tri-fusion was removed at 6:30 PM.  This was done specially because the IR Clinic (Interventional Radiology, those guys that saved my life from hemorrhagic pancreatitis all those years ago), that normally deals with ports, closes at 5:00.  A surgery nurse practitioner came up to my room and removed my tri-fusion an hour-and-a-half after her shift was done.  This was very nice of her.

Except, there’s a rule in the hospital that the IR Clinic won’t put in another port for 48 hours.  And 48 hours after 6:30 last night is after 5:00 on Wednesday, the day I was due to go home.  So I have to stay until at least Thursday–or some day that the IR Clinic can squeeze me in.  Because even though it will have been 48 hours, there’s no guarantee that I’ll get on Thursday’s schedule, which is more fluid than water.