Infusion update. Not so great

yesterday I had my first infusion and as you know from my last post i was super nervous about it. But as soon as I walked into the infusion clinic I had an overwhelming sense of peace. There were so many people there and as I looked around I realized that my fears were so irrational.

I started the steroids and Benadryl through the iv and instantly felt sleepy. The actual medication started about 30 minutes later. I began to feel a little weird but just assumed it was all because of the benedryl. I also had to pee like every five minutes which was annoying because I kept having to drag the IV pole in the bathroom.

The medication stopped and the nurse came over and told me I could go home in 10 minutes. Ten minutes went by and she said that she was going to take my temp and send me home. When she took my temperature it was higher than it was before the infusion so she said she was sure everything was fine but she was going to keep me for another 10 minutes. After 10 minutes she took my temp again and it was the same. Her and another nurse agreed that it would probably be okay for me to go. But then she wanted to take my blood pressure as precaution first. Lo and behold my blood pressure was high. I started having difficulties getting in a deep breath and another nurse noticed. When she came over she told my nurse that I had a rash and apparently hives all over my chest and down both of my arms. Shortly after that I felt me heart racing. They said it was into the 200 range. They called 911 and paged my doctor. From there things went pretty fast. I had a shot of epinephrine, more steroids, benedryl and Demerol injected in the IV. And they did an EKG to see if there was damage to my heart. Thankfully from what they could tell it was just a fast pace but no damage. I felt a little better after the epi shot but was still having a hard time breathing and my heart was still beating so fast.

Thankfully kris was with me but he was all shaken up at this point. They loaded me up in the ambulance and the paramedic did another EKG and was monitoring all of my symptoms. I started to feel really nauseous. When we got to uofm they took me straight back to a resuscitation room where there were three nurses and two doctors waiting. They got me off of the stretcher and got me situated on their bed and then started me up with another IV and gave me something else, not sure what. They did another EKG and agreed that the heart was just super fast but that there was no damage. I stayed there for an hour or two until they decided I was stable enough to go to another area of the Emergency room. I was still hooked up to the IV and receiving steroids and benedryl as well as fluids. I had another episode later in the evening which I consider mini because though I broke out in hives my heart only went up to the high 130's.

They kept me for about 12 hours and told me that I could stay overnight if I wanted. At this time it was already after 11. I was scared to come home knowing that I didn't have any of the medications I needed at home. They said I could stay or go to a 24 hour pharmacy. Kris and I decided to leave and concurred that if anything started to appear on our way home that we would turn around and head back.

We picked up the prescriptions at around 12am and didn't get home until about 1am. It was a long, scary, stressful day.

I'm thankful to kris for being there with me, to my parents and in-laws and my brother and sister in law for so willingly taking care of the boys for us. They are truly a blessing.

I will be on heavy doses of steroids for a while as well as benedryl around the clock. I also now am the proud owner of an epi pen and while I hope I never have to use it, am sure relieved to know that it will be with me at all times just in case.

My rheumatologist came to see me in the emergency room and she started crying when she saw me and said how sorry she was. She had wanted me to start this infusion last may and I kept pushing it off because I was scared of the side effects....so I think she felt a little guilty.

She said she is going to refer me to an allergist and not the kind that deals with food but the kind that deals with why my body is rejecting these biological agents.

Today I had a good day. I got to sleep in and took an early nap before my mom brought Wyatt back home. Then my mom drove me to get Owen from school. It is so nice to be home and in my own comfort zone.

I thank God for blessing me with life yesterday. I guess they called what i had happen anaphylaxis and it is a feeling I wouldn't wish upon anyone. But I know His plans are his and not my own and His will be done.

Thank you for your continued prayers as we try to figure out a new medication regime for my vasculitis and rheumatoid arthritis.

Thanks for stopping by!
Jill