The results of said Hospital Tale
At almost forty, and with 39 1/2 years of medical intervention under my belt, there is very little that I have not yet done in hospitals.
Procedures don’t really surprise me. What surprises me—and dismays me—is crappy staff.
As you all know, most of my medical experiences have been in a pediatric setting (yes, even when I was in my late 30s). In peds, there are many things that should be passed on to adult hospitals when it comes to how you treat medically complex patients. And, indeed, one of my big worries about moving to New Resort was that they wouldn’t know how to treat me.
This has been born out in a lot of ways, but especially in Today’s Tale!
Settle in.
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On the first Tuesday of the year, I had a colonoscopy. Not the best way to start the year. And yes, I’m not even 40, let alone 50, so why, you may ask, was I having one? Because people with CF are at a higher risk for colon cancer, so we start our screenings earlier.
Now, I have determined (this is in no way scientific, just based on anecdotal evidence) that there are two main types of CF: The CF I had, which is where everything else works and your lungs are CRAP (to put it nicely) or, your lungs are OKish, and everything else is CRAP—mainly your digestive system. This is where the colon cancer it comes in. I have the first type of CF—once I got new lungs, my CF was pretty much….resolved, in the sense that the rest of my body works pretty darn well. Yes, I still have CF, and will until I die, but I’m not doing chest PT every day, I’m not taking albuterol and pulmozyme, and I do not take any CF specific meds. My diabetes is called CF related diabetes, but it really isn't. That’s just the easiest thing to say, instead of “post-transplant steroids + menopause related diabetes”.
Anyway, all this to say, I don’t really need a colonoscopy. But I had one because I’m a good girl.
So the prep was better this time—I only vomited once!—and we got the desired results on that end.
But then I had to deal with….staff.
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Ask just about any nurse who has had me and they will tell you I am a good patient. I am polite. I don’t hit them (important in peds!). I don’t call them names, I don’t swear at them, I don’t blame them for things that are not their fault.
However.
We had been told to go to Main Campus to get my colonoscopy because they could access my port.
Hahahahah. They didn’t.
You’re probably saying, Emily just shut up and tell the story.
OK.
So I get there. I go back. One nurse is hunting for an IV spot and one is trying to check me in—running through my meds and such. This is all done with masks on, and the door is open, so there’s a lot of noise because this is a “factory” setting endoscopy unit—move people in, move people out. As in, they don’t know your history, they don’t really care about your history, they just want to cycle you through.
I have a hard time understanding the nurses, so I tell them this.
The first nurse looks at my port and I said, “but if you don’t want to try it, we can put in a peripheral, I have good veins in my right shoulder.”
She doesn’t use those veins. She hunts. She fails.
Now, the first thing is that she’s using a not tiny needle. You must use tiny needles on my veins because my veins are shit.
They call in the anesthesiologist. He doesn’t want to do the ones in my shoulder. (Now, why he was being asked, I have no idea. But he was!)
So after this nurse says, “Well, we can do ultrasound guided IV. I know you don’t like them….” (I had mentioned this.)
I HATE ultrasound guided IV. Here’s why: Instead of going for a surface vein, you’re going into the arm.
INTO. Under the skin, INTO THE ARM.
Think about that for a second. NOT FUN.
Nurse doesn’t want to try my port. I’m…..not sure why.
So I submit.
To six of these.
Anyway throughout all these tries, I am not happy. I am further lead into unhappiness by the following comments:
“Has anyone ever told you you have thick skin?” (I do, but not the way she means, and I don’t)
“Why are you crying?” (BECAUSE IT HURTS YOU IDIOT).
And my favorite, “Are you afraid of needles?”
This is where Emily Honesty came out. “No. And if I ever was, I would’ve had to have gotten over by the time I was five.” Because, you see, I was getting monthly blood draws for my anti-seizure meds when I was a wee bairn. I didn’t mention that I stick myself eight times a day for insulin, so if I was afraid of needles my life would be insanely difficult.
Mr. Anesthesiologist comes in again.
“Well we’ll just have to put one in your neck.”
I have had an IV in my neck, when I was 19 and we needed it there to save my freaking life. Other than that, NO.
So I said that. “No. Absolutely not.”
“Well then you can’t get the procedure.”
“I don’t care. You are not using my neck.”
He shrugs and leaves.
So then we have two more tries, from “good people.”
The first one blamed me for moving during the IV try. Then she looks at my port. “Have they tried that"?”
“Once.”
“I can try it.”
“OK sure. I need a 1.5 inch needle.”
“Oh, we only have a one inch.”
Dad and I drove down to Main Campus because they could access my port and now you’re telling me that in one of the top medical centers in the nation you don’t have a bigger needle?!
No, dear reader. They had a bigger needle. She didn’t want to get one. Let’s be real here. Hem/Onc (hematology/oncology) has bigger needles. I know they do. We use them all the time when I get labs drawn here from my port.
But this woman didn’t want to go find one.
In peds, she would have, or someone would have, if she was a particularly nasty nurse and didn’t want to go get one. I know this, because it happened a lot. If we didn’t have a needle, or we needed help with my port, one of my nurses would call up to hem/onc, who would come over, and then do their thing.
But no, we can’t do that. Why care about patients? Why try to make things easier for everyone?
I left her try with the one inch, no idea why—she didn’t get it, of course, and I said, “well I knew it wouldn’t work.”
The last dude comes in. He gets it, finally. Led to that bruise which topped the post.
I get the colonoscopy. The results are fine.
But I am not having another one.
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Here’s why.
I only have so much vein “real estate” at this point. I’m probably going to need a new port, because the hospital nurses are not trained in accessing the one I have, although the ones at the lab can do it. (This is shitty training, if you ask me.) You are not using my neck. And I don’t want to give up good veins or things that are not really, truly important. For example, a CT scan with contrast can be important. A colonoscopy? Nope. (Yes. I know. Colon cancer. Etc. etc.)
Two, I’m tired of breaking in new people. I’m tired of explaining to them why I have a port, why I’m getting a test done. I’m tired of them messing around with my body and being generally incompetent. I’m tired of having to deal with this, quite frankly.
This is where peds is so much better. In peds, they understand that you might be complicated. Here, they expect everyone to be easy when they’re my age and are shocked when they’re not. They don’t know how to handle a patient like me. And I don’t want to be their guinea pig anymore. Instead of trying to understand me, they get frustrated because I’m not an easy patient. Well gee, I’m sorry.
I also don’t want to put up with stupid questions (SEE ABOVE!) anymore. I just don’t have it in me.
One of the things the nurses kept saying to me was , “Well, you know, if you don’t want to do this we don’t have to.”
I finally said, “Half of my life is doing things I don’t want to do, this is no different.”
And that’s probably an overestimate, but it’s true. “What I want to do” isn’t even in the decision making graph for me. It’s what do I have to do. I didn’t want to be doing this at all but I knew if I didn’t, I’d get reamed out by my doctor. (I’m going to have a talk with him when I see him in June, just about how I’m not really doing this anymore.) “Want to” doesn’t factor into it, lady.
I am proud of myself for standing my ground on the neck thing. That’s my line and we’re not going over it.
I am, however, really frustrated at how this hospital treats medically complex patients like me.