Why advocating for myself at doctor appointments is crucial

A patient speaks up when her veins can no longer tolerate so many blood draws

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by Erin Fortin |

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Last week, I finally had a follow-up appointment after my hematologist had switched me back to Soliris (eculizumab) to treat my paroxysmal nocturnal hemoglobinuria (PNH).

The checkup had been delayed multiple times both on my end and my doctor’s. There were scheduling issues, changed hospital rotations, and an outbreak of flu in my family. Almost two months later, I was finally able to see the doctor to discuss my health.

I have blood drawn before every doctor’s appointment. Each time, my online patient portal is updated with the results of my complete blood count (CBC) test before our meeting.

The frustrating part of the process was that during my initial period of Soliris treatments, I was already having blood drawn every two weeks. So my doctor’s appointment usually aligned with testing, which occurred the week before and the week after the appointment. I thought it was unnecessary to have more needle sticks when those Soliris results were so recent.

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My veins have become weaker over the years from all of the needles used for IVs and blood draws. I have to be cautious about what veins I’m bothering, and when. It feels like a train on a never-ending route with multiple stops on my arms. I must remember where I was poked the previous time to know which “stop” is next. The nurses at my infusion center know these “stops,” but those at the doctor’s office don’t have the “train schedule.”

Those nurses know my face and name but don’t remember how weak my veins are becoming. After multiple pokes and fainting episodes, I knew I had to become my own advocate and take charge of the situation.

When a patient sees a hematologist, an order of bloodwork is guaranteed. I’m a people pleaser, so it’s hard for me to speak up when I’m told to do something; it took a lot for me to question the necessity of so many draws.

But a couple years ago, I spoke with a nurse about all of this, and that nurse spoke with the doctor. The nurse returned with good news: The doctor had approved my request to skip the blood draws for each appointment. That became my new normal until I was switched to Ultomiris (ravulizumab-cwvz) infusions every eight weeks, which allowed too much time between those blood tests; I again had to get them for appointments.

Take a deep breath

During last week’s doctor visit, however, I realized that since I’d been switched back to Soliris, I might be able to skip the pre-appointment labs again. With that in mind, I was called back to the blood draw room, where I was instructed to take a seat. There I saw the tubes and tourniquet that are used when drawing blood.

I politely asked the nurse if she could speak with the doctor about skipping this step, as I’d had bloodwork done last week. She reminded me that CBC counts change every 24 hours. One might interpret that as a no.

My initial instinct was to give in, reluctantly, and let her draw blood, but then I took a deep breath and remembered that this moment was the time to be my own advocate. I agreed with her that my counts might be different, but I asked if she could speak with the doctor anyway.

I was proud for speaking up, even though it felt awkward. I’d never want someone to feel as if I were telling her how to do their job. But it’s my body, and I do have a say. As a patient, I’m allowed to say no. Sometimes I forget that.

The nurse spoke with the doctor, who said it was fine to go without a draw this visit. I released the biggest sigh of relief and was directed back to the waiting room. I felt like a boxer raising my arms in victory. I had advocated for myself and had emerged victorious.

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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