Note: The following occurred back in early June, which now seems like a life time ago to me and I no longer feel as traumatized. But I still feel inclined to share the story…fellow patients can relate, caregivers will shake their heads, others will get a flavor of the craziness of what us patients endure, and for any readers within the medical community hopefully you can now better appreciate more what it means to be a patient, be more empathetic to our journey, and not assume we’re all alike or somehow don’t deserve “better” customer service or to be heard.
So I’m back to discuss (simple) saline infusions, which I didn’t think I would be until my head was under control. It’s not (and the past few weeks have been particularly ugly for my head) but here I am nonetheless. My specialist has decided I should try an infusion of only one liter (instead of the usual two) of saline over a three hour period (instead of a normal one hour period) and again heated to my body temperature. She thought I could get it at home instead of at the infusion center and put through an order as such. A couple days later, I received a call from the lady who coordinates the orders.
The conversation sent me into hysterics, which is why I find myself writing about the traumatic conversation and sharing it with y’all. I would think that anyone who works in a medical office would have better customer service skills and be more sensitive to patient needs than the average person behind a desk in general. I don’t know if this lady was having a bad day, thought she was the doctor for the day, or is this bossy every day. Regardless, no patient should endure such a conversation so for any medical staff reading this post, please know and understand that your interactions with patients can end up being very traumatic.
Here’s a recap of the conversation – almost verbatim – and names (other than my own) have been changed for obvious reasons.
X: I’m calling to tell you that you can’t have the hydration infusion at home. (She goes on about it being too costly to do at home…so it must be done at the infusion center.)
Me: OK no problem. (Note: the conversation should have stopped here! I was disappointed the infusion couldn’t take place at home but understand her explanation and said fine let’s schedule at the infusion center I’ll just have to figure out rides. But the she instead proceeded to talk…)
X: You’re going to need a peripherally inserted central catheter (PICC) or a port.
Me: No I won’t.
X: Yes you do.
Me: No I don’t.
X: You do.
X: You’ll be getting infused multiple times per week if not daily.
(Note: this went on multiple times. So imagine a repeat of stanzas…)
X: Yes Dr. F puts in orders for her patients for as up to as much as daily.
Me: No. There’s no order for it. What?! I would rather die. You do not understand. I can’t even touch a pole. Someone has to escort me to a bathroom even. The machine has to be covered with a blanket. Ask P (the lady who covers the infusion center). I’ve also had a PICC before for two weeks. I couldn’t look at my arm for two weeks, my mom even had to fly out. I am not getting either. I am NOT. You are not hearing me. We do not even know if one liter will work. I have a fear of all things medical. I can’t even look when I get a simple blood draw. If I see anything, I will pass out.
X: You will need one or the other. Dr. F prescribes orders for…
Me (in tears now): Noooooo. If it even works, then it will not be as frequent. Maybe every other week or once a month. Or even just by occasion so I am more functional then. I am not getting either. Even the words send me into a tizzy. I don’t understand why we are even having this conversation. It is not relevant.
X: But you can’t be infused without one of them.
Me (still in tears): Then I won’t get infused. I’d rather be dead than have either in me again. You are not listening. Again I may not even tolerate one liter so this is not relevant.
X: Yes you will.
Me (absolutely hysterical): No. This conversation is over. We will see how one liter goes and I will talk to Dr. F. This is not a conversation I am having with you as there is not even orders for either.
X: OK. I’ll have P call to schedule you at the infusion center.
As I have stated in several different posts now, I have a fear of ALL things medical (no exaggeration). I’ve been that way since I was a kid. Now with chronic conditions, it’s awful and it’s not easy being a patient. I know it’s terrible that I literally said I’d rather be dead as I know other patients with ports or PICCs (and how I wish I could be more like them, I love you my warrior friends!), but it is how I feel. It’s a quality of life I could not handle; it’s a personal decision and not an easy one to make. Having had a PICC for two weeks last year I could never do it again. As much as I hope that saline will give me my life back there is no possible way I could live with a device in me. It’s not a decision that I’ve come to lightly but nothing can change my mind and it was so insensitive of this random lady who has NEVER spoken to me, who is NOT an MD, who has NO orders for a PICC or port, to be having this sort of conversation with me.
She sent my heart rate to almost 200, I couldn’t stop crying for hours, and my eyes were still puffy the next day. I get I’m not a typical patient with such a fear of all things medical. She probably thought I was some crazy patient. Fine. But she was not professional either. She shouldn’t be ordering me around – again, she didn’t even have an order for a PICC or a port! I’d like to think staff in a medical office would be more sensitive. But I felt bullied. Traumatized even. Perhaps next time I will hang up rather than try to have a rational conversation. Clearly only my tears signaled that she needed to back up. But even then it still took a while for her to reach that realization – and even then she was not even apologetic. Not sure why she was so stuck on the PICC or port line but it was not an order I was going to take from her – or anybody for that matter. #sickbutstillsassy