How having a new infusion nurse causes me anxiety, still

Needle phobia makes me insecure when there's a change in my PNH treatment

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by Erin Fortin |

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When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), I had a lot to process. I was told what PNH was, what its symptoms were, and that it was chronic and would last forever. But what stood out to me the most was the course of treatment. At the time, only two options, both IV-administered, were available: Soliris (eculizumab, every two weeks) and Ultomiris (ravulizumab-cwvz, every two months). My mind stopped processing all information after I heard the words “IV infusions.”

I was dealing with a hard-core needle phobia and couldn’t wrap my brain around being on this strict schedule that required needles so frequently. I chose to start treatment with Soliris and dreaded my start date. I’ve written about this period in more detail, covering how much agita I was experiencing and how the nurse who gave me my first infusion created such a safe space.

Over time, I developed a close relationship with that nurse and a second one. I always had one of them for my treatments, and they made sure to schedule them that way since I was still struggling with needle phobia. Both were kind, gentle, and patient as I navigated my emotions. We would chitchat during each infusion, and I got to know them enough that I considered them both family.

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A graphic illustrating a woman rolling a stone up a mountain on the left side, then celebrating it reaching the top on the right side.

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Numbing cream particularly helped me overcome my needle phobia. I used it on my arms to lessen the pain (and even the sensation!) of the IV going in. I numbed both creases of my arms so if the nurses couldn’t get one side to work, the other would be ready to go. The numbing cream helped me more mentally than physically as I dealt with overcoming my worry that I didn’t have enough courage.

After about a year or so, my two nurses could draw maps of my veins with their eyes closed after dealing with me every other week. They rarely had trouble placing the IV, so I began numbing only one arm to avoid wasting the cream.

Grappling with change

I arrived once expecting this typical treatment experience — until I was called back to the chair by a nurse I didn’t recognize. She said that both my regular nurses were out that day and that she’d be taking care of me. Although I’d been receiving infusions for maybe two years at that point, I was overcome with fear that this nurse didn’t know me and my veins.

I explained all my odd requirements: a tourniquet that wasn’t too tight (so I wouldn’t pass out), paper tape because my skin is sensitive to the adhesive, and cooling spray to numb the area even more. All these needs went unsaid with my normal nurses, but this new nurse didn’t know any of it.

And sure enough, the new nurse had trouble accessing my vein and couldn’t get it in the spot that I’d numbed before arriving. I panicked at the thought of using the other arm, the one I didn’t numb, the one where I’d feel the whole thing. I felt that all the progress I’d made to overcome my needle fear went completely out the window.

But the new nurse helped me work through my anxiety attack. She was gentle and reassuring and successfully placed the IV in the arm that wasn’t numb. Through this treatment, I realized how much trust I felt with my two routine nurses, which was fantastic — but it wasn’t realistic that they’d be the only nurses I encountered.

From then on, I’d walk into the infusion center uneasily because I didn’t know which nurse I’d have. Would it be someone I was comfortable with or someone new? Would they be gentle or unintentionally aggressive, causing more pain? It turns out that yeah, there were times I had new nurses. But each time that happened, I gained confidence that I could handle it.

After four years with my two nurses, they both progressed to higher positions that pulled them away from the infusion center. As their friend, I’m unbelievably happy for them. But as a patient, I’m sad. Now each time I go for a treatment, I have a rotating nurse as the staff is evolving. It’s still nerve-racking when I don’t know if a new nurse will have trouble placing the IV. I wonder how many pokes it’ll take and which spots to numb beforehand.

I’m learning that it’s better for my mental health to shift placing the trust in the nurses to placing the trust in myself that I can handle whatever happens.

Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.


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