Catching the Happiness Bug

Friday morning at 3am I'm scheduled for my final immunoglobulin treatment(for this round). By 2:45, when I've seen nothing, I page the nurse, who comes in at 3am with the treatment, but none of the typical pre-treatment meds. I point this out and after a few back and forth calls to the resident on call, pre-meds are dosed and the IVIG starts by 4am(I'm forever wondering how patients who aren't completely aware get themselves taken care of...)

I go over with Andrew, the resident, my plans for the day to be sure my expectations are realistic. He confirms to me that with a hemoglobin of 9.4 and hematocrit of 28, I can return to my completely normal active schedule. This makes me feel even better!

I let him know if that's the case, I need to be discharged and out the door by 10am. I have 3 schools with belt testings scheduled for the afternoon. He assures me they'll make it happen. Andrew is really starting to grow on me.

Its 8:30. The morning inches by. My IVIG ends, I eat breakfast. I remind the nurse I need to leave on time. I wash up, brush my teeth and hair, good riddance to the hospital gown.

By 9am, I am packed and ready to go...but no discharge papers yet. I convince the nurse to remove both my IV ports. I remind the charge nurse of my schedule, who tells me the doctors are rounding right now.

At 9:15, Dr Jonnson, Andrew, and Amy, the transplant nurse practitioner, arrive for rounds. They go over my treatment plan and follow up instructions. It's quick and light-hearted. I am glad. A couple of med changes, routine checking on my parvo stats, and probably more transfusions and infusions until the virus is completely gone. Everyone agrees I can go, and Amy says it'll take a few minutes for the discharge papers and I'll be good to go.


It's 9:45. I'm getting especially ansy. Where is the agreeable Andrew when I need him? The charge nurse pays me a visit, being sure I know that if I leave AMA, against medical advice, my insurance could easily deny payment for the hospital stay. I don't argue that I'm not leaving against medical advice, simply without agreed-upon discharge papers.

My stress level is rising. My time is running short. I can't be late for belt testing today, and I can't leave without signed discharge papers. Being late for belt testing is like the dance teacher being late for a recital, but leaving AMA is financial suicide.

At 9:59, my nurse runs in, waving the discharge papers. "We got 'em!"
I think she's as excited as I am. I scurry out of the hospital, thanking everyone as I go, and I'm in the car by 10:10.

Despite the stressful morning, my drive back is, as always, long, and this time, I spend it reconciling my treatment plan and parvovirus as I understand it.

• I have parvovirus, and it kills of red blood cells before they mature enough to benefit my body. The virus, in the form I've got, is extremely rare, without a lot of previous cases AND I've got the worst case my doctors have seen.
• Treatment for the virus will be recurring IVIG infusions, planned to decrease the infection each time, only no one knows how much each time. The frequency and total number of treatments is also unknown, simply that we'll do them until the virus is gone.
• Treatment for the likely dips in red blood cell counts will be transfusions. Right now, I feel good; I'm freshly juiced up on a blood transfusion...Yay! No one knows how long the benefits of the transfusion will last, and its likely I'll need to be juiced up again when they wear off.

Although initially frustrated at the lack of shared information, concerned about the doctors' limited exposure to parvo and just plain scared of the unknown, I realize now this plan is completely do-able. I breathe in my resolve and exhale out my fear and frustration.

I'll need to continue weekly lab work...no big deal, I already do labs weekly. I am, however, going to change my draw day to Fridays. That way, results will be in by Monday and action, if necessary, can be taken early in the week without upsetting my heavier loaded end of the week.

Transfusions and infusions are becoming old hat. And, even though I don't know how temporary, this treatment IS temporary.

The rest of my day is stressful and rewarding. All three belt testings are extremely successful. As it should be, students and their families are completely unaware of events in my life leading up to this afternoon.

The kids do great and their parents are proud. Our cheeriness is infectious and we're all genuinely happy for post-testing photos. I'm so grateful that my stressful day ends with a room full of beaming kids and impressed parents.

Everyone leaves in a good mood...especially me.

My Hospital Swan Song

Homecoming - Day 6 Post-Op (Oct 10, 2012)

I went home today! It took til the afternoon, but I still got to go! :) 

And, as soon as I got in the car(like a normal person with a functioning kidney), I had to go to the bathroom. I laughed at my own surprise.  I can't remember the last time I had to urgently go the bathroom, but I guess this does happen to people who's kidneys work. The drive was long, and we had to stop at the pharmacy. I couldn't make it waiting in the pharmacy and had to excuse myself to wait in the car. I was spent. 

When we got to the house, I went straight to bed. Climbing 2 flights of stairs really pushed me over the edge. Everything hurt, and I needed sleep. I had been awake longer today than I had for the past week. When I laid down, I could feel my body shaking inside, everything was tense and tight and swollen.  I appreciated the calmness of laying down, but it was the first time I had laid on a flat surface(hospital bed was always raised) and the stretching on my abdomen was way more bitter than sweet. 

I miss the IV pain medications. I had made a mental resolve to only use Tylenol once I got home. That lasted about 2 minutes into my arrival at home(the time it took me to find the Vicodin and open the bottle).