First, let me just say I am grateful for modern medicine. As much as I hate to be subjected to it, I am here (at least in part) because of it. That being said…
It was another adventure in the wonders of a state hospital this morning. Today was my Cardiac MRI, a not all that commonly done procedure to track how my PH is treating me. Traditionally, they’ve been using Echocardiograms and Right Heart Catheters (RHC) with the disease. Both have their respective benefits and drawbacks, and now this MRI is more accurate than an Echo and less invasive (although maybe not as telling in some ways) as a RHC.
Anywho… I arrived 10 minutes early only to be told they were running late. Since this same procedure ran two hours late last year, I was prepared with a book and my new iPhone toy. However, being the dutiful patient I am, I read the sign encouraging me to use the Ladies room before the procedure and endeavored to do so. In order to do this, I had to be let into the lab, just enough to catch a glimpse of the convict on the MRI table and his security guard from the prison standing watch.
Wait… I’m early and am going to be made late by this guy running late from prison? Seriously? Don’t get me wrong, I’m enough of a humanitarian to be okay with health care for all (and this post isn’t about that) but I’ve got things to do, places to go! Come on, now!
Okay, so I wait out my time and go in to get started. I am informed of the procedures they are going to do, which are wrong. Yup, wrong. I don’t even know what exactly it is they are going to do and I still know they’re wrong. They wanted to subject me to intravenous dye I did not need for a test that was not ordered by my doctor.
“Oh, there seems to be some confusion…” says the tech. (Ya think?)
“Right. Well, it’s Tuesday, so my nurse is in. Call her. Your papers are wrong.” was my reply.
They were wrong, I was right, we proceed with the test.
I change into the high fashion hospital gown, although for this test I am allowed the dignity of my top (no bra) and bottoms, jeans today for me (this gets important later). Better yet, I even get to keep on my shoes. If you’ve read my previous posts, you know why this is important to me. Also, hospital floors are gross.
Into the tube I go. Thankfully I am not terribly claustrophobic, although for those of you who have not experienced such a test, let me just tell you that you lay on this table too narrow for humans (and I’m kind of a smallish medium girl, I don’t know how the big guy from the big house fit on it before me!). Hooked to a variety of monitors, you are slid into the tube, with about a six inch clearance to your face, and given a “Holy Shit, I’m Panicking, Get Me Outta Here” ball, technically called a “squeeze ball” which is your primary connection to the outside world for the next 30 – 45 minutes. No big deal, actually, when you consider some of the other fun tests that are possible.
I lay in the tube listening to the beeps and whirs of the machine, muffled some by the headphones through which they pipe music to distract you. We begin the test, the first half of which is fairly uneventful. Then the voice of the tech comes to me through the machine…
Tech: “Is there a metal button on your jeans?”
Me: “Yesss…”
Tech: “They seem to be in the way. Do you think you can shimmy out of them down to your knees?”
Me” “Ummm… yes…”
Wait, I’m in the plastic equivalent of a connoli shell. Remember the six inches above my face? It’s also above the rest of me… and you want me to shimmy??? Well, I did it somehow, and we move on.
A majority of this test involves big breaths in, big breaths out, and then holding it just longer than is humanly possible or comfortable, but you do it anyway, and you do it on cue.
As this is going on, the music continues to pipe through my headphones. The soundtrack to my adventure? “No Air”. For those of you who struggle for your breath with PH, you get the irony. For those of you without, plug your nose for a while and breathe through a straw. It’s a pretty accurate simulation of the feeling. Then, play the lyrics over and over in your head. “No air… no air… how am I supposed to breathe with no air?”
Good times all around. The test is done, no harm done. Results in a week. Despite the relatively benign events, this is still a stressful morning. How do I deal? Like any good patient… I took myself shopping for a friend’s birthday at Crate and Barrel and then out to lunch, including a glass of wine. It’s not all bad!
I sign off with my same message from last time. I feel great. I really do. I defy the odds, and am deeply grateful and awestruck by that. But until my phriends stop suffering, until I can wake up and not think about the oxygen tube in my nose or the list of meds I need to take and when, until prognosis is no longer on my mind, it will not be enough. The hope and faith in a cure continues.
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