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A nurse biting his nails after failing numerous times to do a blood draw. The patient is not pleased and is giving him side eyes.

You Know What You Know

Don’t ever doubt you are the expert when it comes to your own medical care. We might not have that fancy diploma to hang on the wall, but we have experience and that should override most everything else. Here are three recent examples of where I knew best and how sometimes I was even listened to as the ‘expert’.

Blood draws

I recently had surgery, and it required numerous blood draws and the placement of an IV line. How much clearer can I be than to say ‘use the smallest needle you have, because I am a hard stick and my veins roll and often even blow.’ This message is often lost, and I endure multiple attempts to draw a blood sample. I think the nurse listened to me, but I couldn’t swear to that because it still took three attempts to place the IV line. I’ve had phlebotomists appear to take my warning as a challenge, wanting to show me that they know better and having to sheepishly admit after failed attempts that they blew it when my vein blows, leaving me with enormous bruises. It’s happened that way more than once, making me more vocal about the techniques they might try.

Anethesia

Prior to my surgery, the anesthesiologist listened to me closely as I explained I tolerate anesthesia, but they need only to use a very small dose to knock me out. I even joked that all that was needed was a quick wave of the anesthesia magic wand over my body, and received a head nod as an acknowledgment of my knowledge. Post-procedure, it took over two hours for the recovery room nurse to wake me, so long that my husband was apprised of the trouble they were having. I thought the anesthesiologist listened to me, but I couldn’t swear to that either since I was stone cold knocked out. But they can’t say I didn’t tell them in advance.

Infection

Post-procedure by just a few days, I began to run a low-grade fever. At least it is what I consider low grade, because my ‘normal’ temp over the past few years has consistently been 97.4-97.8. I can verify this by my medical records because each time I go for an MS infusion, they record my temperature. I’m sure you understand how difficult it is to convince someone you are feverish when you register a whopping 98.8 degrees, especially since all medical information lists normal at 98.6. I tracked my temp over a few days, watching it slowly rise to 99.1, and when I called the doctor’s office, I was told there is often a slight temperature elevation post-surgery and the doctor was confident it would subside. I imagine the nurse was just placating me by ordering urine and blood tests after I insisted something was wrong. I’ve had sepsis before thanks to a UTI and don’t ever want to repeat that experience, and this fever felt oddly akin to that experience. When I was called with the results and prescribed the appropriate antibiotic for a particularly virulent infection, I thanked for the nurse for listening to me, but when I hung up the phone I thought, shouldn’t they listen to the expert all the time?

Advocating for yourself

None of this experience is specific to multiple sclerosis, but just a general reminder about how we know our own bodies and we have to speak up when we need to be treated differently than the standard of care. We know what we know. We may not be listened to all the time, but we have to advocate for ourselves if we want the best possible medical outcomes with the least complications.

Wishing you well,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Sarasshore
    2 months ago

    I just had a neurologist in the hospital that would not prescribe prednisone the way that I knew I needed in order to get over this relapse I’m still in. I did however have great nurses, admin & PT/OT team that witnessed how my body started to get better then took a downward turn when that doctor’s course of steroids was over. I’m very thankful for them. I advocated for myself to them, but they were able to find another doctor that prescribed
    the steroids I needed to knock down the inflammation so I’d actually start getting better. It took an extra 3 days to start that course but I made incremental improvement until I was moved to this “skilled” nursing facility to finish rehab. Don’t even get me started on this place!
    I also have a problem with phlebotomists trying to poke me in places other than where I tell them and having my veins roll, blow or collapse on them when they try and draw blood or place an IV. My hands and wrists are where most people can get it done with a single stick but the really good ones can get something in my forearm. I don’t even let anyone near the crook/bend in my elbow. Might be able to see the blue line under the skin but it’s so deep and rolly, they’re never gonna hit it.
    My temp is also like yours and new nurses would kinda look at the thermometer and then me and I’d explain that “my normal” can go all the way down to 96.8 area and I’m still fine but if there’s too many 98+ I’m quick to say, “that’s a little high”. I pay attention to all my vitals so if my normally low bp is elevated I can try to figure out why or if my pulse ox isn’t between 98-100 I can try a different finger that is a little warmer. I also have feet that range in color from purple to pissed off red or some combo of the two with orange splotches. Any time a new medical professional I’m meeting for the first time catches a glimpse of my bare feet I see the “somethings wrong with her” look and I stop whatever we’re talking about to tell them there’s nothing wrong, it’s “my normal” and ask them if they want to do a cap test(push a spot making it white then let go to see how long it takes for blood to return to that area) to feel better about it. Actually had a string of nurses coming to my room one day.
    It’s nice to know I’m not the only one that has doctors & medical staff that don’t want to listen to someone without a M.D or RN diploma hanging. It doesn’t make it any less frustrating but at least I’m not the only one.

  • Tazz
    3 months ago

    I’m 100% with you on the blood draws and the “normal”body temperature. I’m not sure whether the overly-confident-newly-qualified ones or the many-years-of-experience blood suckers are the worst. I recall a young newly qualified nurse being vastly over confident about drawing blood from my difficult veins, and I think she actually learnt a valuable lesson about listening to patients who have a lot of experience under their belts when she failed miserably and had to get someone else to take my blood. Unfortunately the years-of-experience ones generally treat you as it it’s YOUR FAULT that they can’t get blood, especially if they try to use a vein that you’ve politely told them will no longer happily give up its contents.

    I’ve found that as I’m someone whose normal temperature sits at around 36.0 Celsius (or 97F) arguing that you could have an infection because your temp has hit the usual “normal” of 37.0 C (98.6F) can be like drawing teeth.

    It seems to be getting worse as I get older and my hair gets greyer, and when you add in that my MS related mobility problems mean that I need to use a walker – well count me out as someone who has any functioning brain cells left – or at least that’s unfortunately how I’m sometimes left feeling.

  • cubbers1
    3 months ago

    Blood draws-totally agree! Almost all phlebotomists take it as a challenge. ‍♀️My advice: when you find a good one get their name and typical schedule. I finally found one who can do my blood draw first time every time, without me even feeling it usually!

  • KKJackson
    3 months ago

    Thanks Laura
    Yes we are the expert, and we do indeed know what is best for us. At the very least have a friend or family member assist to be your healthcare advocate.

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