What Does it Take to Feel "Cared for" by Medical Professionals?

  • I like “no drama,” really I do.  At the beginning of this month, I received my third round of Rituxan infusions.  I was really looking forward to treatment.


    My wrists and fingers had begun flaring in January and weren’t letting up substantially.  My toes were tender and very “ouchy.”  And, I could no longer stretch my palms/fingers to reach an octave at the piano.  Now THAT was the final straw, what with rehearsals and performances coming up.


    It was time for re-treatment.  The positive effect of the previous round of infusions from last summer were sustained for about eight months.  An improvement over the first round’s effectiveness of five months.  I’d be thrilled if this round lasted for one year.  How cool would that be?

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    Not only was I looking forward to treatment itself, I was anxious to try out a different hospital’s outpatient infusion center.  My experience at the previous location was rather negative (see Living with RA: Infusions, Phlebitis, and Self-Advocacy) and I basically refuse to go back there.  I had high hopes that this time would be different and go smooth as silk.


    HA.  Don’t get all excited just yet....we had a long ways to go before this journey was complete.


    The day before the scheduled infusion I receive a (slightly frantic) call from my RA nurse at 3:30 pm informing me that the infusion center needed recent blood work.  Recent as in within the past seven days and my previous blood tests were just over two weeks old.  I was out on the town when the call came in and I turned around to head to the lab for a blood draw.  The lab had to wait for orders to be faxed over and it was about 1.5 hours before I could take my veins home.


    Fortunately the blood counts looked fine and my infusion set for 7 a.m. the next morning could take place as scheduled.  Well, at least I was there in person and everybody involved sincerely wanted to get me started as quickly as possible.


    Let me summarize that first day at the new infusion location:

    • Arrive at 7 a.m., get settled, and have veins that play hide-and-seek
    • After multiple sticks, get an IV started just below my right elbow
    • Take some Tylenol, hang a bag of saline with benadryl in it, followed by a bag of solumedrol (pre-treatments to avoid or lessen infusion-related reactions)
    • Get on the computer and catch up reading emails
    • Near the end of the solumedrol bag, begin to feel burning in my arm and notice a hard lump surrounded by rapidly increased swelling
    • The IV had infiltrated and steroids were under my skin, not flowing through my veins (damn)
    • The resulting pain triggers a vasal reflex, ie. my blood pressure drops so low that it can’t really be measured (below 40/?) and I begin to pass out (this is the 3rd time that I’ve experienced a similar response to pain which was barely “felt”) - this creates much too much drama and I hate being such the center of attention
    • Someone with an ultrasound machine is called in to start another IV, but several attempts fail while I’m trying really hard to stay connected through the gray fog
    • Talk of admitting me short-term to the hospital is mentioned so that a different team can access veins higher up my arms or in my neck as a last resort
    • I make a plea for pediatrics to come try before the outpatient center gives up on me
    • Yippee!!  Yahoo!!  the pediatric nurses rock!!  IV started and Rituxan gets going at 11 a.m.
    • I experience an infusion reaction which responds to more benadryl and steroids; the infusion is only paused for about 30 minutes waiting for symptoms to subside
    • My rheumy had ordered that the Rituxan be infused over six hours (to try to avoid one those reactions) and I get done about 5:30 p.m.


  • Ten and a half hours on Day One from start to finish.  I slept a lot over that weekend.

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    So far how did my experience compare to the infusions last summer?  Surprisingly similar.  Both involved nine sticks and four to five nurses, a vasal reflex, infusion-related reactions, and 10 hours in the hospital chair.


    However two weeks later, the story is rather different at the new location.  The nurses at INOVA Fairfax Hospital (yes, I’m naming them because their care rocked!) had planned ahead and were ready for me.  No nonsense.  No drama.


    Here’s a summary of Day Two at the new infusion location:

    • Arrive at 7:30 a.m. and vascular expert is immediately called to start my IV (this was arranged the night before)
    • Even before I’m completely settled, the vascular expert arrives and I have an IV started by 7:45 a.m. (only ONE stick)
    • Pre-treatment starts with benadryl then solumedrol; we must wait 30 minutes for it to do it’s job
    • It’s 9 a.m. and Rituxan is flowing, scheduled to be infused over six hours
    • I experience NO infusion-related reaction for the first time in six infusions
    • All done at 3 p.m.

    So what does it take to feel “cared for”?


    The major difference between the two hospital infusion centers is one of attitude and approach.  The nurses at the first location seemed to put their personal egos ahead of the patient’s unique needs.  When I asked that we call the person who had successfully started my IV previously, I was told no and that she would be “too busy” to come down to the infusion center.  Then the nurse who had never been able to start an IV on me yet during earlier visits tried three times instead of the customary limit of two, blowing some of the better vein choices.  Her track record is now 0/7 attempts.


    Ego.  Attitude.  Arrogance.


    The nurses at the second hospital learned quickly that an outside expert was needed to get me started.  They didn’t waste their time attempting to start an IV when it had been so difficult before.  They didn’t put me through the pain and frustration.  They worked efficiently and effectively to insure that everything went as smoothly as possible.  They planned ahead.


    Individualized approach.  Calm, efficient, effective care.  Putting the patient first.


    Now where do you think I will be going next time?


    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: March 29, 2011