The Start of IVIG

I arrived at the hematology center at 10:00 AM today to start my first round of IVIG (Intravenous Immune Globulin).  They were a little overbooked and didn’t have a chair for me until almost 11 so I had to hangout in the waiting room for an hour.  Once they finally called me back I was able to relax.  They began by drawing three vials of blood.  They ran one of the vials through the machine so they could get a platelet baseline prior to starting treatment.  I had just had my platelet count checked yesterday around 1:30 PM (approximately 22 hours earlier) and the count was 22,000.  Overnight they dropped to 16,000 – UGH!  Good thing the whole point of IVIG is to increase my platelet count!

The nurses started me on an IV drip and gave me two Tylenol pills to take to reduce the risk of headache or fever.  Once the IV fluids finished they switched me to a Benadryl drip.  The Benadryl is meant to reduce the risk of an allergic reaction to the IVIG, but all it seemed to do was make me incredibly sleepy.  Finally, the nurse attached a bag of Solu-Medrol, which is intravenous steroids.  This was in place of taking my Prednisone this morning.  I’ll be receiving the IV steroids in large doses tomorrow and Friday, as well.  Starting Monday the doctor wants to decrease my dose, which means I can begin the process of tapering off the Prednisone!

After the Solu-Medrol finished I was finally ready to begin the IVIG.  The nurse explained to me that I would be receiving four Carimune NF 12gm vials each day.  The first vial is given slowly so that the nursing staff can look for/stop any allergic reactions before they escalate.  Luckily, I didn’t have any adverse reactions and they were able to speed up the drip with each vial.

12:25 PM – 1:55 PM : Vial 1 : 1 hr, 30 mins
1:55 PM – 3:05 PM : Vial 2 : 1 hr, 10 mins
3:05 PM – 4:10 PM : Vial 3 : 1 hr, 5 mins
4:10 PM – 5:05 PM : Vial 4 : 0 hr, 55 mins
Total time required for IVIG treatment : 4 hrs, 40 mins

I knew I was going to be sitting in a recliner for hours, so I brought with me a backpack of snacks and things to do.  I had the essentials – a book, my laptop & charger, phone & charger, and a puzzle book.  I was right next to two open outlets, so I used one and plugged in my phone.  I fully intended to watch Netflix on my laptop the whole time, but the WiFi was spotty (as was the cell service).  Luckily, there was a large flat screen TV in the front of the room that was tuned to USA, which had a Law & Order : SVU marathon on all day.  Watching SVU made the time go by a little faster.  The most tedious part of the whole treatment was simply trying to keep my arm straight.  I have one really good vein that nurses always choose to place the IV in and, unfortunately, it is on my dominant arm right at my elbow.  Because of this, I can’t bend that arm much during treatment or the IV bag/vial stops dripping.  This also means I have very limited use of my dominant hand during this time.  Conclusion: I am not going to bother bringing the puzzle book tomorrow because writing in it will be far too difficult. Since the WiFi is so spotty, I might not bother with my laptop either.  I think the plan will be to just watch whatever is on TV, nap, and play games on my phone.

My husband picked me up from the hematology center a little before 5:30 PM.  I don’t want to jinx it, but it has been about four hours since then and I haven’t had any side effects from the IVIG at all!  It hasn’t made me tired and I never got the massive headache that the majority of patients get.  I finally feel like I was on the right side of a statistic today!  Even if I get the headache after tomorrow’s IVIG, I’m just excited today was side-effect-free!

Here is the schedule for the rest of the treatment:
Thursday, 10:00 AM
Friday, 9:45 AM
Monday, 9:00 AM

Wish me luck!  More to come tomorrow!