Another day, another doctor’s appointment. The nurse walked into my exam room with a basket of phlebotomy supplies for the blood draw that had been ordered. I didn’t bat an eyelash; I’ve been through this routine so many times I know it in my sleep.
”I had an IV in this vein two weeks ago and blood taken here last week,” I said, gesturing to various bruises on my arms. “These two veins are the ones I save for blood draws.”
The nurse ignored what I told her and tried to access a vein right below the dime-sized bruise from my most recent draw. It didn’t work too well, and she was unable to fill even one tube.
“I should get something to drink, it usually helps with this,” I said. Hydration usually makes my blood draws a thousand times easier, and I wanted the second stick to be successful.
The nurse shook her head. “No. That will take time.”
On her second try, she again ignored the “good veins” I’d pointed out and stabbed at a small one that was at an odd angle on my forearm. The needle didn’t hit the vein at all, but she dug it around in my arm until I cried out.
”Stop,” I told her. “No more. Get me the orders for the bloodwork. I’ll have it done somewhere else.”
The nurse silently left the room, and when she came back with the orders she was curt and visibly irritated. At that point I really didn’t care if she was offended. Both of my arms stung from her botched attempts at the blood test and I didn’t want to continue to be used as a human pincushion.
Another night, a nurse was taking my vitals. He grabbed a blood pressure cuff from his rack and wrapped it around my arm. I knew it was way too small, and politely mentioned that he’d want to use a larger size to get an accurate reading with me.
The nurse shook his head. “That cuff is your size.”
Except it wasn’t. The cuff squeezed my arm until I was in agony and several small blood vessels burst, leaving a web of red marks on my skin. Needless to say, the blood pressure reading was high. Pain tends to make that happen.
When I was having an operation on my knee, a very impatient nurse in the pre-op area insisted I wasn’t having surgery or anesthesia. I most certainly was, on both counts. When I tried to clarify that I was in fact there for knee surgery, she became even more exasperated and talked over me. She finally realized she’d confused me with another patient who was having something else done, and she muttered something under her breath and slunk away.
One day during my intravenous immune globulin (IVIG) infusion for primary immunodeficiency, I noticed my arm was swelling. The nurse did check my IV, but after she deemed it fine she ignored other complaints about it. Three hours after the infusion I was the emergency room getting an ultrasound from wrist to chest, because the arm had ballooned so much. Even though the line had been “fine,” it had still infiltrated.
Three of these incidents caused pain. Two required the procedures to be repeated. One led to a trip to the ER. The fourth didn’t cause any physical harm but made a stressful day even more stressful. What they all have in common is that they might have been avoided if the provider had just listened to what I was trying to tell them.
I’ve read many of the medical professional forums where patients like me are mocked. You went to medical or nursing school; I didn’t. I’m a “special snowflake.” I’m too fussy. You can tell me a thousand stories about how you triumphantly drew blood from a vein a patient said was impossible. How dare I tell you how to do your job!
Stop. Let’s both take a deep breath. We’re on the same team, remember? Or we should be.
I’m not trying to tell you how to do your job. I’m trying to help you help me to the best of your ability. I’m trying to make things easier for both of us.
Unlike some of your other patients, I’ve been put in a position where I have to be knowledgeable about myself and my medical issues, because they’re serious. I have to be aware of how my body works. I’m not just pulling things out of thin air.
This isn’t my first rodeo, or my fifth, or my 12th. My illness will likely require me to actively remain in weekly treatment for the rest of my life. In the calendar year 2019 alone, between January and August, I’ve had 74 medical appointments, tests and procedures. After clocking in that many hours, I can share the results of past trial and error with you.
I’m also trying to protect myself. If I say I need a certain size blood pressure cuff, it’s because my arm has been injured before and I don’t want it to happen again. If I stress that a certain vein is a hard stick, it’s not because I’m squeamish. It’s because numerous nurses have found that vein very challenging, but they’ve had better luck with some other locations you could try. Yes, I know it looks good. Yes, I know it’s right there. There’s still a reason I’m asking you to avoid it, and it’s for both of our benefits.
I’d like to think we share the same goals. I want my diagnosis or treatment to go smoothly. You want your work to go smoothly. I’m sure neither of us want me to be there longer than necessary, and I’m also sure you don’t want to have to repeat procedures that were botched the first time around.
As a patient I’m constantly told I need to be proactive about my health. I’m hammered over the head with platitudes about how it’s a “collaborative effort” and I need to express my needs and concerns to my healthcare team. I’m told if there’s a problem or potential obstacle, I should let them know. There are books and pamphlets and videos on how I, as a proactive patient, need to know what feels right with my own body so I can report issues.
I do all that, but it’s useless unless my healthcare team is actually willing to participate in the collaboration. In order to accomplish that, please see me as an ally in my healthcare, not an adversary.
Please listen to me, for both of our sakes. It will save me pain and it will save you time.