Day 83 "Tube Free!" and Day 85 "Crazy Day!" (edited version 2)

Day +83 “Tube Free!”

Tuesday, March 4th (Late Post)

Today started with an early morning visit to the BMT to have one last blood draw using the Neostar before it was removed. We then headed over for our 9:30am appointment at the doctor’s office to have the catheter removed. In what was to be a 15minute procedure….I hate waiting. It never matters what time the appointment is and if you get there 20 minutes early or 10 minutes late. They make you wait. Sorry for venting my frustrations but time, my time, the time I can spend with my family and doing things that are important to me, it has a different meaning to me now. Anyway…

The procedure itself was short and relatively pain free (like I said before, it’s the Lidocaine shots that are the worst part and they were.) The PA, Maria, that preformed it was the same PA that was there assisting when it was inserted three months ago. I’m never quite sure if I want to be “talked through” any surgical procedure (and they talk through every time regardless) but she was especially sensitive to my anxiety. From prep time, removal and clean up the whole thing lasted 15 minutes. She left us with care instructions and we headed back over to the BMT for lab results and a meeting with Dr. V.

We were taken back to an exam room and given a copy of my lab report. And we waited. For over an hour. Finally, Laura, the PA, came in to discuss the results. Everything looked pretty good, except that I’m still anemic. My counts dropped again since my last blood draw a week and a half earlier. Again they wanted to give me a Procrit injection, but told us our insurance company would not approve it. This was interesting, because our insurance company said they had no record of denying its authorization. So, now I’m looking at six hours of blood transfusion on Thursday. Go figure- the day I get the Neostar out I find out that I need my first blood transfusion since my last hospital stay on Jan. 17. My only hope is it helps me get over the utter fatigue I’ve been feeling recently.

Day + 85 "Crazy Day!" (Late Post)

Thursday, March 6th

It turns out that the clinic never really asked for authorization from the insurance company. We’re still not exactly sure what happened, but, Dr. V. sent this message to us Wednesday evening:
“the procrit ‘police’ were using medicaid guidelines for ALL pts and included Courtney in it. The people who police the procrit are not transplant savvy....anyway, we have it squared away and Courtney is NOW APPROVED for the procrit and she can get it in clinic tomorrow instead of the transfusion.” Kinda frustrating, but at least it’s cleared. An interesting thing our insurance case manager told us was that Procrit is in fact considered experimental for patients with AML, but went on to say that this doesn’t apply to me because I’m in remission and NOT leukemic. Nicely stated.

Anyway, Dr. V ended up giving me an injection of Aranesp – like Procrit but supposedly more effective and longer lasting. I’ll take a 2 second injection over a 6 hour infusion any day. Especially when I no longer have the easy access catheter for the blood, and, historically, they have a hard time starting IV’s on me.

What made this so frustrating was that two weeks ago when my blood counts started dropping I could have received the injection but by not receiving it sooner I actually became symptomatic with anemia. So it's kind of like feeling really tired but adding butt kicking fatigue on top of it. But what mattered in the end is that I got my injection and should feel improvement over the next few days. And I’ll return to the clinic on Thursday for follow-up lab work.

Unfortunately, Todd had to stay home with Emma and Aidan because our sitter had a sick child of her own. Fortunately, Melissa was able to come with me and keep me company. It was a nice visit, I haven't hung out with her in a while and we were VERY fortunate to return home early enough to avoid having to drive in the snow. YES, SNOW!! Way more than I ever would have expected (4-5 inches)– in Texas – in March!



I’m sorry I got so behind. I promise I’m trying to catch up. Thanks for caring enough to follow our journey.