I arrived a little early to my appointment today because my husband had a 10 AM meeting he needed to be at the office for and the hematology center was on the way. When I arrived I asked the receptionist about a sign I had seen in the waiting room mentioning an online portal to view visit summaries, lab results, and future appointment times. She took down my email address and sent me a registration link, which I was able to click on and fill out while waiting for my appointment. Voila! Easy access to all of my lab reports with the touch of a button! What would the world be like without technology?!
The nurse called me back at 10 and placed me in the corner recliner. I immediately plugged in my phone. Upon seeing all the needle marks and petechiae on both of my elbows she decided to use a vein on the back of my forearm. I was nervous about this spot because I hadn’t had an IV there before, but I came to love it. The needle prick was less painful and it was ten times easier to move around. I had almost complete use of my arm. It was also nice to be able to lay my arm flat, rather than turned upright. The only downside was that I could feel the IV when I moved my arm around and it seemed less secure, like it could fall out more easily.
The nurse took a vial of blood to check my numbers and then attached the IV to a bag of fluids. For some reason, though, the tubing/drip was defective and blood started leaving my arm and filling the tubing. The nurse immediately recognized the problem and switched out the tubing. Unfortunately, she needed to unscrew the tube in order to replace it, which meant blood from both the tubing and the active IV leaked onto my arm and her pants when she made the switch. Thankfully, she was quick to get the new tubing screwed in and the IV bag started to drip properly. Crisis averted!
The nurse gave me two Tylenol to prevent a headache and fever and then began my Benadryl drip around 10:20. In the meantime, my numbers came back from my blood work. My hemoglobin dropped to 10.3, which is still a fairly safe number, but it isn’t great that it dropped. Hopefully tomorrow’s number holds steady. My platelets, after one day of IVIG, were up from 16,000 to 33,000! They more than doubled! I can’t wait to see how they look in the morning! This treatment might actually be working!!!
I was excited because the TV was set to USA again and the Law & Order : SVU marathon raged on. About a half hour in another patient asked for a channel change, though, so that was a bummer. I put in my headphones, curled up with a blankie, and fell asleep listening to the Hamilton soundtrack. Benadryl makes me so sleepy!
By the time I woke up it was 12:15 and I was already on my second vial!
10:40 AM – 11:55 AM : Vial 1 : 1 hr, 15 mins
11:55 AM – 1:00 PM : Vial 2 : 1 hr, 5 mins
1:00 PM – 2:05 PM : Vial 3 : 1 hr, 5 mins
2:05 PM – 3:10 PM : Vial 4 : 1 hr, 5 mins
Total time required for IVIG treatment : 4 hrs, 30 mins
Without anything good on TV, the afternoon dragged on once I woke up. I couldn’t manage to fall back asleep. The only remotely interesting thing that happened was that one of the other patients in the room had an allergic reaction to Rituxan. The nurses had to carry her out of the bathroom and call an ambulance. Four EMTs crammed into our little room full of recliners and IV poles to transfer her to a stretcher and wheel her out. I know everyone reacts differently to medications, but I’m glad Rituxan is my last resort and not an immediate possibility – it seems pretty strong. The whole time this was happening I had to use the restroom, but the EMTs were blocking the path, so I anxiously awaited their departure. The rest of the afternoon remained uneventful.
The nurse waited to give me the Solu-Medrol until the end of treatment this time. The drip finished by 3:20. I think she gave it to me at the end today because when she gave it to me in the morning yesterday my hot flashes hit early afternoon while I was still in the chair. She wanted to avoid the reaction I think. Unfortunately all it did was delay the side effects until about 8pm, which meant I got hit with the steroid side effects and the IVIG side effects at the same time.
As I left the hematology center I felt a faint pounding in my head, but it was mostly just uncomfortable, rather than painful. By the time I got home, though, and tried to do some work at my desk I felt shaky and my head was throbbing. I had to lie down in bed for a little while. The headache was only on one side of my head and it felt as though someone was pushing on it. Unfortunately, my nap made my headache worse somehow. I sat at the computer to watch Netflix while I ate dinner, but I had to go back to bed immediately after because the bright screen was killing my eyes. I fell asleep for a little bit. As I am writing this, I have no noticeable side effects from any of the medications. Hopefully I slept them off.
In the morning, I need to remember to ask my doctor for a prescription for painkillers to combat the wicked headache. I also need to double check that I’m not supposed to be taking any steroids at all over the weekend – won’t that send me into withdrawal? It doesn’t seem like a good idea, but if I double check with him and he confirms that I heard him correctly, I’ll trust him.
Two days down, two to go! Halfway there!