When I woke up this morning, I immediately noticed that yesterday’s infusion spot was bruised/discolored, warm to the touch, and swollen. Also, I was short of breath, so I was a little nervous that my hemoglobin levels had dropped again, but this morning’s blood work showed my hemoglobin was back up to 11.0. I’m almost at a “normal” level! I showed the bruise to the nurses and told them about the shortness of breath I had been feeling and they determined it was merely a reaction to yesterday’s infusion.
The nurse this morning chose a vein on my left forearm for my blood draw and IV. She drew three vials in order to run a full CBC, as per the doctor’s instructions. The results showed that after only two days of the IVIG treatments my platelets were up to 59,000! That is the highest my platelets have been in months and I’m only halfway through my infusions!!! After the blood draw, the nurse started the IV fluids and I felt an immediate sharp, stabbing pain in my arm. It turns out the vein blew up. It isn’t dangerous, but it means the nurse had to immediately remove the IV and find a new vein for the day. The blown vein is something I hope to never have to endure again – it continued to throb for a half hour or so.
The nurse chose a vein in my right forearm, so I had to keep my arm facing up most of the day, but it wasn’t so bad. The Benadryl burned a little when it went through the IV today, but I think I was still just on edge from the blown vein. Between the swollen green bruise on the back of my forearm from yesterday’s infusion site, the blown vein in my left forearm, and the needle marks and petechiae covering both elbows, I feel like a human pincushion.
I just pray that some of these heal by Monday because I am running out of good veins.
The doctor wasn’t in today and I still needed to ask about this weekend’s Prednisone dosage, so I had to speak with the on-call hematologist. I explained that I’d been on the 100 mg dose for a month and was worried that taking no steroids at all over the weekend would cause withdrawal. She completely agreed and told me to take 80 mg Saturday and 80 mg on Sunday and then my doctor would likely decrease my dosage to 60 mg on Monday. Since the pills I have are 50 mg pills, she said I could simply take one and a half each day (75 mg). Easy-peasy! I’m not so sure I’ll be ready to decrease to 60 mg on Monday, but I’ll worry about that when the time comes.
Today was a slow day at the hematology center. For the first time all week, I was surrounded by patients that wanted to talk, but another patient was talking loudly on her phone right next to my face the entire time she was being transfused. It was extremely rude and frustrating. Taking a quick phone call is one thing, but talking loudly over a TV and other patients trying to converse is annoying as hell. SHH. Thankfully, she was just receiving iron so her transfusion only took about a half hour. It was refreshing to talk to other patients afterwards about their conditions and treatments. I felt less alone.
Apparently the office closes early on Fridays and the nurses and doctors can leave as soon as their appointments are done. By 1:30 I was the only patient left for the day, so the nurse had to stay another two hours just for me. The room felt sad and lonely with me in the corner surrounded by empty recliners, but I was able to watch Netflix on my laptop. I threw on “House” and curled up with a blankie and some snacks.
10:45 AM – 11:55 AM : Vial 1 : 1 hr, 10 mins
11:55 AM – 1:05 PM : Vial 2 : 1 hr, 10 mins
1:05 PM – 2:10 PM : Vial 3 : 1 hr, 5 mins
2:10 PM – 3:05 PM : Vial 4 : 1 hr, 5 mins
Total time required for IVIG treatment : 4 hrs, 30 mins
My husband picked me up around 3:30 PM and we headed back to our apartment. I had a little bit of a headache, but nothing like yesterday’s. The only difference between Wednesday/today and Thursday was the time of day the Solu-Medrol was administered. I am inclined to believe that yesterday’s side effects were due to receiving the steroids in the afternoon, rather than the morning. I’ll make sure to ask for them first thing on Monday.