Tuesday, January 08, 2013

A rant about listening to your patients and being respectful

I have Ehlers-Danlos syndrome.

I also have IgG deficiency.

This means I need to have regular blood work drawn to check my levels (so that I only get IVIG when necessary). But, the EDS makes it damn difficult to get a good vein stick. My record is currently 15 sticks before a good one to get blood/insert an IV. Several people get regular blood draws in 1 stick, generally if they're careful and confident. I average 2-3 sticks for each blood draw, however.

I know my body's quirks, honest. I've been in it for 30+ years, getting stuck for blood work/IVs regularly for the last 20+ years. I know where my best veins are, what tricks work the best to get them to cooperate, and what things are most likely to make them blow out/collapse. Those people who get me in 1 stick? They generally listen to me when I tell them these things.

I went in to have my blood drawn for a check of my IgG levels prior to my office visit this week, and it took 4 nurses and 7 sticks to get just barely enough blood for a CBC and IgG level. Those 7 sticks? They didn't actually upset me, in themselves - as I kept explaining to the nurses, I don't get mad when people have to stick me multiple times (that's just a fact of my life), only when they don't listen to me. After today, however, I've got a few more things that make me angry.

Nurse #1 went for the vein I told her to, but she was not very skilled and spent several minutes digging around with the needle before finally blowing the vein out. As she was doing so, she kept saying, "I keep asking the Lord God to guide my hand, but He's just not listening." -- No. Just don't even don't do that. I really get faith, I do. But there are these things called skill and competence in your job that I'd rather you have first. If you don't feel you have the skill to do what you need to do, and God needs to intervene, please find me someone else. And if you feel the need to pray while you're drawing my blood, please keep it to yourself.

Nurse #2 was the nurse who got my IV in the first time I came in for a treatment - she the one they call whenever they have a 'difficult stick' in the treatment area - and I recognized her when she came into the lab area. She tried to tell #1 where to stick for the best results on me, offered to do it herself, but #1 decided to try again while #2 watched. #1 kept apologizing for every little thing. For hurting me, for sticking me more than once, etc. I kept reassuring her that it was fine, that this is part of being me, that I wasn't in that much pain.

And then she started the repeated apology that got under my skin. "I'm so sorry - this really isn't normal! I normally get even difficult ones in 2 sticks!"

Really? I've told you over and over that this is normal for me. Guess what. I'm your patient, and this is normal for me - that make it your new normal. Adapt. And while you're at it, please stop pointing what a freak I am every other sentence. I know I'm not normal in a whole host of ways, medically, but when I say that something is common for me and you reply that it's really not normal, it's not great for my feelings of self-worth.

#2 tried the same vein as #1 first tried (why would anyone think it's a good idea to go after the same vein someone has already blown out?), and got a flash of blood, but no flow as it blew out in a second spot. Good job. Then she tried the OTHER vein #1 had tried, though I doubt #1 had hit that one. #2 didn't hit it at all, either. "It's like it just keeps disappearing. I can feel it, then it just goes away." I told her that my mother had problems with vacutainers collapsing her veins, and that it may be that I'm developing the same issue. She opted to go get another nurse.

I shed a couple tears in pain and frustration while they were out of the room, but was smooth-faced when #1 came back in. She looked at me, apologizing yet again for how long this was taking, etc. and saw that my eyes were a little bit red. "Oh no, did I make you cry? I'm so sorry, I didn't mean to hurt you." Sigh. Really? This. Is. Not. About. You. How dare you guilt trip me for crying? I'm being stuck with needles, repeatedly. I'm enduring tourniquets on/near joints that already hurt from arthritis and easy dislocation. I'm allowed to cry a little.

Nurse #3 listened to my explanations, opted to try my other hand, and stuck me between 2 knuckles and nowhere near either of the veins in the hand that people stick. It hurt more than any of the previous 4 attempts and (naturally) yielded no results, as it was miles away (relatively speaking) from the nearest vein. She gave up and passed it off to the next one.

Nurse #4 came in, smiled at me, and listened carefully to the things I told her. She immediately went to get other equipment to respond to the idea that vacutainers may be collapsing my veins. She tried one of the veins #1 and #2 tried and got nothing, then found a tiny vein in the front of my wrist that she was sure she could get. She was careful, gentle, made soothing noises but no repeated apologies, and finally got blood flow by using a manual syringe. I've got a few small bruises from where her fingernails were pressing into my palm to hold my hand very still to keep from compromising the blood flow. Nurse #1 was working the syringe to draw the blood, which was flowing, however slowly. She decided to switch to the vacutainer again - and got maybe 6-8 drops of blood before it stopped going anywhere. #4 knew what she was doing, got results, but #1 had to screw with it and make it unusable. Thankfully, they'd gotten just enough to run the tests they needed and I was allowed to leave.

Ehlers-Danlos means keeping the smiling, placid face on, even when I'm writhing internally from the pain - because if I show it, the nurse will become a distraught mess of apologies again. It means being able to lie with a level, measured voice, "I'm fine, it doesn't hurt" - because if I tell the truth, the nurse will become even more tentative and unsure of herself, thus hurting me more.

I left the office in angry-ranty mode. By the time we got through lunch and going to the store for a few things and some prescriptions, I was in sarcastic/cutting remarks about everything mode. By the time we got home, I was falling into the depressed, "why am I so broken" mode, which is where I am now. Sleep will help, I hope.