IVIg Infusion #1

Well, I guess the snowstorm we got didn’t slow down my first IVIg infusion.  Woke up this morning at @ 6:45am just stressed out.  I called into the infusion center at 7am, and the answering service said normal start time, I was relieved.

We got to the infusion center around 8:15am.  I was met by reception, then forwarded to the infusion wing.  The nurse that I had was amazing.  Very thorough, and answered all of my questions.  By 8:45am, my IV was in, and they drew labs for both CRP, and CBC.  After that, I was moved into an infusion room.  Both my boss, and alternative life partner were there to support me.  Without them, I would have had a tough time with the infusion.

At about 9:00am, the infusion started.  However, there were some minor changes to my IVIg prescription.  They changed my IVIg to Octagam 10% 20g / 200mL to start.  The next infusions going forward, I will be receiving Octagam 10% 40g / 400mL.  My infusion rate was supposed to be 50 mL /hr, then 60 mL /hr, then to 90mL /hr.  I decided that since this was my first infusion, I wanted to go slow, so I asked them to just keep me at 60mL /hr.  The chair was really comfortable.  I brought snacks and gatorade to keep me motivated.

I met with my immunologist at around 9:45am.  Explained everything in detail.  Gave me a few tips / pointers.  I will be seeing him again in a month, then after that, I will only need to see him every 3 months going forward.  Instead of Monday-Thursday infusions, I decided to move all my infusions to Friday’s.  That way I have the weekend to fend off the fatigue.  He also recommended that we get at least 2-3 infusions done prior to the upcoming sinus surgery.

My boss stayed for the entire infusion.  It was really nice to just sit and have a fun conversation, and just talk.  The best part was reading reviews on Amazon for Haribo sugar-free gummy bears.  I haven’t laughed so hard in months, literally crying.  It kept my mind at bay what was really happening.

For reference:  The horror at 30,000 feet!

“My flight was leaving at 8 in the morning. After awaking and trying to get to the airport, I forgot to grab something to eat. I usually take my time and do things in order, but not this day. I was traveling from Boston to LA coming home from a work trip. I do it regularly so nothing was new to me. I stayed in the same hotel and knew the time I needed to leave to get to the airport on time. During my work trip, I stopped at a convenience store and saw these gummy bears and thought they would be a perfect gift for my son Charlie. He loves gummy bears and gummy worms. So the morning I was to head back to LA, I slept through my alarm. That never happens. I rushed to get out of the hotel and threw those gummies in my carry on bag to make it on time to the airport. After speeding and filling up gas in the rental, I made it to my gate as they were boarding.


I get on the plane and head down the aisle to find my window seat near the middle of the plane. I asked politely for the two adorable older ladies siting in the middle and aisle seats if I could pass by to my seat. They obliged. The lady in the middle must have been around 80 years old so it took her some time to get up and make sure she was holding on to something so she didn’t fall as she stepped into the aisle. I thanked them as I sat and settled into my seat.


Fast forward 20 minutes as we reach our cruising altitude of around 30,000 feet in the air. As I reach into my carry on bag to grab my headphones, I see the gummy bears. Since I am hungry and need something, I decided to open them up and just have a few to hold me over until we land. I wanted to save some for my son so I maybe had 4 or 5. But I had 4 or 5 too many because once the bears had a few minutes to adjust to their new home, they began to work.


It started out with a little cramp. Which is normal with gassing on a plane. You do not want to fart on a plane so you hold it in. It is airplane etiquette. It would come and go over a few minutes so I thought nothing of it. Then it got worse. The cramps intensified, the sweating started, and I began to notice the older ladies looking over at me. About 30 minutes into eating these bears, my thinking went from, “Oh these are just farts, I can hold them,” to “Oh dear God not here.” I have been a Christian my whole life and this is the test. If there is a God, please help me leave this plane with my dignity intact.


After waiting for the intense cramp wave to pass, I stood up and jump over those two women. I could not wait for them to stand so I stood up, (my back facing them) and tried to shimmy pass them. I think a toot came out cause I heard one say, “Oh Lord, was that you?” After reaching the aisle, I waddled to the back of the plane where the least amount of risk would be. To my dismay, it was in use. That left one bathroom left in the front. I looked down the aisle and saw my Mt. Everest. I had to somehow keeps my wet cheeks tighter than Fort Knox whilst waddling forward, whilst praying no one gets out of their seats.


After 5 minutes of stop and go, I made it to the bathroom and was pulling my pants down as I entered the bathroom. The door was still unlocked as the sweet release was underway. I thought I died. I thought this was it. Even though I was on the throne confessing my sins, I thought my time was called. I lost count on how many knocks at the door there was. I must have been in there for 45 minutes, but I made it.


I washed my hands, and threw water in my face to calm me down. Opening the door, I saw the faces looking back at me. Apparently the seal to the bathroom was not air tight. Letting just the slightest airflow from that bathroom to the main cabin possible. These were daughters, mothers, and children looking at me. I could feel their questions and comments. “What have you done?” “We still have 2 hours left.” “Please divert this plane.”


As I began walking down, the man in the first row of first class grabbed my arm. He said, “Hey man, where is your seat?” Confused, I told him and he said, “Go get your stuff and come back and sit here, you need this more then me.” I was embarrassed and ashamed. I had a family at home waiting for me.  


I recommend theses bears to anyone. But please eat them responsibly.”  -Amazon Customer Derek

I didn’t have any adverse side effects at start, or during the infusion.  Just my arm burning a bit from the IV.  At the end, when the pump was done, they blasted me with the rest of the IVIg, wow, that was a rush.  I could definitely feel the change in the flow rate.  The fatigue the last 30 minutes started to set in.  It started with my eyes just being on fire, then evolved to my whole body just aching.  The entire time, both my BP/HR was fine, first one was high because I was just anxious.  No fevers.  So it looks like the Octagam 10% IVIg will be good to go.

The infusion took about 4 hours to complete with a flow rate of 60mL / hr.  The subsequent infusions will be upped higher and higher as this progresses.  A good target rate for infusion is about 120mL /hr.  Which will take infusion times from 8 hours, down to about 4 @ the full dose amount I need.  At the end of reception I met with the scheduler to setup my infusions going forward, I will have infusions:

• May 3rd
• May 24th
• June 14th
• July 5th
• July 26th

After the infusion, my boss took me to my favorite breakfast place Snooze.  Best place ever.  I could eat there every day with no regrets.

Right now?  I am really just tired as hell, its 3:00pm.  I will update this post later tonight with how I am feeling, but I think it will mostly just be the fatigue.

7:00pm.  Low grade fever, and body aches have set in.  My face also seems more red than usual.  These are common side effects of the IVIg.  The fatigue somewhat comes and goes.  But for the most part things seem to be going ok.

9:45pm.  Body aches continue, the fatigue is really starting to set in, and I just feel icky.  Probably going to head off to bed soon, hopefully I can just sleep all night.  I have the ENT appointment tomorrow @ 10am to go over pre-op with my ENT.

Bill for infusion (Including 1/2 of my full IVIg dose, 4 hours @ the infusion center) : $5,704.00