Don’t Give Me That Look
For the past 10+ years, I’ve been going into the local hospital outpatient infusion clinic to receive Rituxan infusions. This medication has been a god-send; truly changing the trajectory of my disease. Make that diseases, as I live with both multiple sclerosis and rheumatoid arthritis.
Infusion-related reactions early on
Early on in my adventure with Rituxan, I would have infusion-related reactions. The first time it happened, it started with a tickle in my throat, then a cough and itchy ears. The itchiness spread across my scalp and my voice became scratchy. I became flushed and, by the time my tongue felt thick, I finally told the infusion nurse that this wasn’t going to go away.
Benadryl and steroids to reduce side effects
Silly me, I should have spoken up earlier. Stopping the infusion and administering extra Benadryl and steroids helped to reduce the side effects and we could continue. This happened again and we almost stopped the infusion entirely. But I wanted to continue.
During my 2nd infusion, I was smarter. Once side-effects emerged, I spoke up sooner and the reactions didn’t grow quite so severe.
Trouble finding a vein for my biologic infusions
In those early years, I didn’t know the infusion nurses too well. Each appointment I was usually assigned to someone different. Some nurses were better at getting an IV started than others. There were just a few visits where we worked through almost all the IV nurses in the small infusion center before they called in a vascular expert.
My record for needle sticks before getting a successful IV started is NINE. That has happened twice!!
Finally, a nurse who is great at finding a vein
It didn’t take too long before we learned which nurses were just better at finding my veins and which weren’t. I would subsequently be assigned to those nurses. Yay! Once I met my “one-stick wonder nurse” Leslie, we were a match made in, well, needle heaven.
Two years ago, the multiple outpatient infusion clinics in the hospital system were combined into one massive center located in a fancy new cancer center. Nothing really changed (at first) because I saw the very same nursing team as I had before.
My treatment experience with another infusion team
In January, for the first time, I was assigned to the “other” infusion team that I didn’t know. Ok, I’m flexible. This would be an opportunity to meet a few new people. My assigned nurse was very young. Rather than starting the IV herself, she called upon the department’s technician. That’s fine; as long as someone is good at what they do, I’m happy.
She did ask me where I normally get my IV and I proceed to point at a very specific spot on my inner forearm. I’m pale-skinned, but even with that going for me, you can’t really see my veins under the skin. They are well hidden.
Being given "that look"
The technician expresses her doubts and gives me “that look.” The look that says I don’t believe you and I know better than you. But she tries anyways without taking much time and definitely without giving me a heat pack to plump up the area.
Guess what? She blows the vein. She didn’t just miss the vein; she literally hit it and kept going. (Crap, I thought to myself.) And it hurt.
Ok. Next, I suggest another spot that is usually generous with the free-flowing blood at times. Nope. She misses that too. On her third attempt, she finally gets something started.
A canceled infusion
Then…the new nurse finally comes back. She proceeds to ask me the normal pre-infusion questions. But she forgets to ask me if there are any changes in medication. I volunteer that I was currently taking an antibiotic for a nasty sinus infection that was taking forever (like months upon months) to clear up.
Darn. They called my doctor. The infusion was canceled for the day. And we just wasted good IV access which was painfully achieved.
A painful experience the second time around
Two weeks later, I check in to the infusion center again. And again I was assigned to the new nurse. The same technician came in to start the IV.
I’m a patient woman and willing to give people a 2nd chance, particularly if maybe they learn to listen to my suggestions and stop giving me “that look.” She tried one time, missed, and caused a lot of pain because I think she barely tapped a nerve. I almost started crying, both in frustration and from the pain.
This time, I stopped her in her tracks. No more! I meekly ask, “Is there ANY chance that Leslie is here today?” Somebody goes and tracks down Leslie because YES she was! So Leslie got my IV started without even a pinch of pain. We caught up on life briefly before she returned to her patients.
Advocating for my care at the infusion clinic
Before I left the clinic that day, I asked someone if they could please assign me back to Leslie or someone from the other side of the infusion center for my follow-up appointment. I really wanted to see someone I knew and trusted and who knew me. There’s a very good reason I’ve stayed with this particular infusion clinic for 10 years, the awesome nurses being the #1 reason.
I’ve thought about what I might have done differently under the same circumstances and honestly, I don’t think that I would have said anything different. But that doesn’t mean that I shouldn’t do something different next time.
Having a provider that listens is essential
Perhaps, if I meet another healthcare provider who starts to give me “that look” in response to what I tell them when they ask a question, I may just have to return the favor with my own look that says — "Look, it’s my body and I know it well. You would be wise to listen to any tips I might be able to provide to help make your job easier and to ensure my own comfort."
I need to get in front of the mirror and practice a stern, but patient and kind, look of my own. I really don’t want to be put on the verge of tears again at such a simple thing as an IV getting started. It really shouldn’t be so difficult, no matter how much someone’s veins are shy and never pop up if you slap them silly.
Have you ever been on the receiving end of “that look” from a healthcare provider? I’d love to hear your story.
Thanks for reading!
Here are my other articles on RheumatoidArthritis.net.
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