Living with Rheumatoid Arthritis: Infusions, Phlebitis, and Self-Advocacy

By Lisa Emrich, Health Guide Monday, August 09, 2010

"Ouch! Sorry I didn’t mean to jump like that.  The pain was unexpected."  The infusion nurse Kay (not her real name) said, “that’s okay, we don’t need to flush the rest of this saline.”  It was the end of an extremely long and stressful day.  Let’s start from the beginning.

 

There I sat in the chair, cheerfully ready to greet a long day.  Kay checks me in and hands me the lunch order form.  It is Rituxan infusion day and I’m ready to get some B-cells depleted.  Symptoms had begun to return after a lovely remission and I was anxious to get to that point again.

 

Kay got the supplies ready and prepared to get an IV started.  I had promised myself at home that I would not let her try to stick me again.  Her track record was 0/4.  And my previous visit took two nurses and six sticks to get an IV started.

 

“Who was the other nurse which the head nurse tried to call last time but wasn’t here?  Can we call her to get the IV started?”

 

“Oh, she’s really busy.  She wouldn’t be able to come down here for this,” says Kay.  Darn it if I let her try three times to get an IV started.  That’s 0/7 now; and yes, I’m keeping track.

 

Kay calls an oncology nurse down to assist, apparently best in the department.  On her 2nd try, she gets a line started but my vein threatens to blow even with the slightest pressure.  This was where the previous IV had been and my wrist was still a mess.  It was a no go.

 

The head nurse arrives and tries three times unsuccessfully.  That’s eight tries so far on this one day.  I’d brought my own heating pad in hopes that it would assist in plumping up these veins.  Doesn’t seem to work today.

 

The nurses keep talking about how I should really consider getting a port.  Dammit, I don’t want a port and I don’t really need a port.  I have veins and I just don’t understand why these nurses have so much trouble.  The nurse who infuses my steroids during MS relapses is 6/6.  I keep trying to point out the “good” spot.

 

The head nurse from ICU is called.  By this point I am quietly emotional.  It has become difficult to keep smiling and cheerful.  When the ICU nurse arrives, she takes her time looking for veins and talking to me.  She calls someone in her department to bring the “vein finder” which has an infrared light that highlights the veins hiding under the skin.

 

My hands are ice-cold now even with the heating pad.  She takes her time.  Then after a little while literally holding my hands, she calls her department again.  “Please send [the very best pediatric ICU nurse] down to the Infusion Center,” she says.  “I need a little help.”

By Lisa Emrich, Health Guide— Last Modified: 08/03/11, First Published: 08/09/10