Okay, so I figured everything would run pretty smoothly and sent mom and Winter off to the fair while I spent the day at the hospital. Mom says they had a great time (which I suspected they would-because Winter has always loved the fair). Winter even rode the the ride that takes you up in the air and drops you up and down by herself! Mom hates that one!
Anyway, right when I got in i had my blood run then sat in the room for about thirty minutes reading before the doctor came in to see me. It was Dr. Biss, who I had once before, and made himself seem like a total dope by being unprepared by not having my chart, or any information on me at all. I just thought he was that new and that he was having an off day or something and shrugged it off, but while I'm laying there waiting for him to do a bone marrow test he says, "So you're done with your prednesone?" I'm like, "No, you haven't given me a taper."
Then he proceeds to tell me how there's no taper listed on his chart and that I could just quit. Well, I didn't realize how upset the whole experience had made me and totally started to wig out and tell him that I know I need a taper, that I'd played that game before. And he says, "Oh, you've had problems coming off it before?"
Now I'm really upset, and cry and am shaking with adrenaline, and tell him, "I'd rather GIVE BIRTH." So then he and RN are trying to calm me down, and my mind is now stuck on the memory of screaming in pain every four hours for three or four days because they can't figure out that they cold turkeyed me off of prednesone the first time and I bawl all the way through my bone marrow test, making the RN doing the procedure nervous, and John the other RN had to come in and watch to make sure they weren't torturing me. And Megan (the RN doing the procedure) had to promise me she'd talk to Dr. Hodis to get me a prednesone taper.
Anyway, I had to go straight down to get my lumbar puncture (spinal tap, for those who don't know, where they inject chemo into my spine) so when I went down there (I had stopped crying finally) and they took my vitals the nurse had to look at me funny and ask, "Is your heart rate normally 104?" I then explained the situation to her, how Dr. Biss had scared me and she asked if I thought I could take a breather and calm down and she'd even double check. I said yes, because I liked everyone in radiology and would probably be fine in a few minutes. And I was.
The LP went fine, I was already numb still from the last lidocaine shots, so it was probably the easiest one I've ever had. I finally got into the recovery room, and had a very shaky lunch at about four thirty, and was grateful I cheated and ate a few hours before my LP or I'd have probably still been wigging out. Megan had sent down a prescription with a taper instruction sheet while I was getting my LP.
When I got home I ate again and took a quick nap, got up and colored with Winter, then went to bed early, exhausted after taking the dose of pills on the taper they gave me and told my husband to make sure I didn't have a fever and that I was breathing when he got home and my mom to check before she went to bed. It all went well until midnight when I discovered that the taper they had planned for me was too steep and I ended up with my right knee feeling like my knee cap was shot off and having to call the triage nurse to ask if I should take another 10mg of steroid to taper off more slowly. She said she didn't know what it was and didn't have the charts and to take two loritabs instead until she could straighten it out with the doctor. So I did and paced and cussed and colored in Winter's coloring book for a half hour while the pills took effect and went back to bed.
I didn't get a call, but I took some prednesone this morning, and the next drop is equally as big, and I haven't heard from the doctors office, so I'm probably going to have to call and ask about adjusting a bit again. And they were going to no taper!
Anyway, I feel okay right now, and will be getting my dressing changed today, and actually feel like I've grieved for the first painful experience now and will be a very FIRM self advocate today about my own medications.
counts
WBC=1.8
HCT=29
PLT=86
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