Other CVID Bloggers

Check out this post from a woman living with CVID in Missouri.

My First IVIG Experience

It was really a very common procedure; they had never had a problem in the past. My doctors assured me that they would start the infusion slowly to see how my body responded, then they would up the drip rate until it was at full throttle. The first time would take 6 or 7 hours but they would probably be able to get it down to 3 or 4 in a few months. I got to the infusion center 45 minutes early, my Eddie Bauer backpack filled with books, magazines, sudoku, writing materials. I had pushed aside my nervousness and tried to imagine I was at a spa, time to myself with no interuptions…granted, I would have a huge tube feeding into my arm. I was told there was no wireless internet and there were cute little hand-written signs all over the place letting me know that I wasn’t to use my trusty Blackberry (As though cell phones were some newfangled inventions and its capacity for annoyance had just been discovered.) I was to be completely incommunicado from work. that freaked me out a bit, to be going through withdrawal while having my infusion. Everyone at work knew that I had mysteriously annouced several weeks earlier that I would be out today for “personal reasons.” People asked me if everything was alright. I dismissed them with vague references to matters that I had to attend to, rolling my eyes as though I were mediating a battle between quarrelsome relatives. 

I sat in the waiting room for two hours. It was clear that as a newcomer I was at the bottom of the liquid medicine dispensary totem pole. People who arrived after me and who had appointments after me we escorted in with first name greeting and hugs. The nurses all know their stories. Granted most of them had no hair and probably had less that 6 moths to live but an appointment is an appointment damn it. If they want to let the hospice folks in first then don’t invite the primary immunodeficiency newbies in until after noon. The really sick wore their colors as hats or scarves on their hairless heads. These colors like those of gang members at the local nightclub gaining them entree into vip rooms and past the scrub green bouncers. I awaited, hirsuit, with a less than impressive diagnosis credentials.

 My IVIG infusion began uneventfully and I hunkered in to my adjustable hospital bed, completely absorbing myself in back issues of Bon Appetit…

20 minutes into it:

My lungs start to get tight, my respiration becomes shallow and rapid, maybe I just have a touch of asthma, maybe I am just tense, what did I have for breakfast, my head is feeling hot, flush, I can’t really breath…

“Um, excuse me, I think I am having a reaction.”

My head feels like it is being crushed in a vice, “your face is really red”, I can’t breath at all now,

Cut the IV, flush, benadryl 50mg, 100mg Prednisone, call Dr. _______, he’s accutely hypertensive, wait, not hypo, no HYPER,

Lungs begin to release, slowly, more air, panic subsides, doctors hand rubbing my foot, comforting, I am feeling better, the pressure in my head goes away, that was freaky.

They must have the AC on,  get under the blankets, still too cold, I’m feeling nauseaus, excuse me, can I get an extra blanket and something to puke in, shiver, shiver, shiver, shake, uncontrolable shaking, jaws clenched, I’m in a meet freezer…

Page Dr. _______, he has the rigors, do you feel like you have the rigors, whhhhaaaat the hehehehehell is thththtatttt? 50mg Demerol, you are going to get very sleepy…warm, sleepy…

I walked out 2 hours later after sleeping off the Demerol. I had only received 20 mg of the 500mg I was supposed to get. The doctor would  call me about next steps.